Lewis Capaldi is Taking a Break. Why Can’t I?

Singer-songwriter-musician Lewis Capaldi, a white man in his 20s, wears a black jacket and pants and a white T-shirt as he stands in front of a microphone with an acoustic guitar wrapped around his neck, hanging across his chest. His eyes are closed and his lips are slightly parted as he sings into the mic.

On June 27th, 2023 Lewis Capaldi officially announced his hiatus from touring, citing “the impact of Tourette Syndrome” as part of his decision, one discussed in his award-winning documentary How I’m Feeling Now. He did not take this decision lightly, empathizing with fans about how disappointing it is to look forward to a tour that’s been postponed—and the costs associated with it.

There’s no doubt that Capaldi loves touring, his fans, and the ability to play music in front of thousands each night. As a fellow Touretter, I’m thrilled that there is both representation of Tourette’s and the need for rest from such an international star. But I most resonate with the final part of his Instagram statement, which apologizes for rest while simultaneously justifying it: “I’m so incredibly sorry to everyone who had planned to come to a show before the end of the year but I need to feel well to perform at the standard you all deserve.”

While I’ve hardly achieved the same elevated status as fellow Touretters like Capaldi, Billie Eilish, Howie Mandel, Steve Wallace, and others, I’ve achieved a lot in my life. I’ve been Key Club President, a foster for kittens, a published writer, musician, and so much more. This confuses people when I do desire rest.

There are days when I can indulge in spontaneous plans. On other days, I need to reschedule advanced ones. It’s all up to my body, which cannot be tamed on a whim. During times of stress it can flare up, waxing and waning as it pleases.

But you were fine yesterday; you’ve pushed through it before, I think, an echo of others’ sentiments when I cancel or postpone plans. It also shapes others’ decisions about whether or not to include me at all. Their explanation is usually, “I didn’t think you’d want to come” or “It would be too stressful for you.”

This leads to shame, guilt, and feeling excluded, just for being in an unruly body; requests to forgo my comfort and embrace pain for the sake of others’ needs are seen as the “right” thing to do. While there are many times wherein I believe in pushing through (if possible), like an important celebration or funeral, it can be stressful on the body if the brain decides it’s a “tic-ier” day. It often results in having to take muscle relaxers, sedatives, and pain relievers to get back to a manageable spot.

Yet I still feel the need to apologize.

Many with Tourette Syndrome are encouraged to push past these difficulties, which is why you don’t often see people disclose their Tourette’s. As a child, my neurologist focused on controlling and eliminating the tics he believed were temporary…and my fault. He blamed chocolate, video games, SpongeBob, anything but a disability. So the masking began—and worked—and continued throughout my childhood and teen years. I was an honor roll student, involved in many service clubs and honor societies. I hung out with friends, pushing through the discomfort for the most part and making up an elaborate excuse when I couldn’t.

I believed my tics were a personal failure…until my late diagnosis at 22, long after my tics “should” have left. I had to confront the fact that rest was not a privilege, yet the guilt of canceling or modifying plans remained.

Like many others in the world, doomscrolling TikTok is a favorite pastime. User Vermin and the Rats (with a green pixie cut I wish I could pull off) confronts me with truths: “Is it possible you tie your sense of self-worth to your productivity and your ability to help others, and that’s why you feel so guilty when you’re not able to be productive and you have to rest? That you’ve been masking your disabilities for so long, that you genuinely don’t know how to gauge what your needs are?”

It’s Just Nerves: Notes on a Disability by Kelly Davio is an essay collection chronicling the author’s experience as a disabled person in the 21st century. She writes, “If you are going to disclose your illness, our culture tells us, you had better do it in a way as to make other people feel gratitude for their own good health, to take advantage of their robust bodies….” My addition? If you disclose your illness, you better be a superhuman of sorts. A gold-winning athlete. A wildly successful musical artist. Even then, you’ll still need to apologize for the need to rest. After all, your exceptionalism is waning, which is unacceptable.

In many programs across the United States, services for disabled students are referred to as ”Exceptional Education.” If you happen to be “gifted” AND disabled, you’re labeled as “Twice Exceptional.” Disability, as mainstream culture understands it, cannot inherently be associated with anything good at all; it must be paired with something to “make” it okay. In this case, being exceptional is the only acceptable way to exist in a disabled body. Don’t believe me? Just look at inspiration porn, or the objectification of disabled people to make able-bodied people feel better about their own lives.

When people respond to me with “That’s okay” or “You’re still such a capable woman” after explaining how my Tourette’s works, I get frustrated. Of course it’s okay. I never said anything about my capabilities. I never apologized for my existence.

It’s hard to correct them outright. I’ve even had to correct myself when I’ve thought or said something similar to people with other disabilities. It’s hardwired into so many brains that disability cannot coincide with anything neutral or good, even if you’ve lived it. The only way out of it is to rest boldly. After all, one of the primary tenets of disability justice is rest. No maybes, buts, ifs, or sorries. Just rest.

To practice, I’ve been typing out and removing apologies from my requests to postpone or skip events. I often still leave them out of fear or guilt, but I’m slowly improving my self-advocacy, simply taking the rest I’m allowed to take. I can no longer feel the need to “make up” for the way I exist “proving” exceptionality.

Gretchen Gales (she/her) writes…a lot. After realizing becoming a veterinarian meant being good at math, she pursued writing and teaching as a career instead. You can find more of her written and artsy stuff at www.writinggales.com.

Billie Eilish Isn’t “Just” a Musician with Tourette’s, But She Makes Me Feel Seen 

green toned photo of Billie Eilish singing on stage to a crowd

There are many reasons why I’m obsessed with Billie Eilish. Though she’s six years my junior, Eilish has become a personal heroine of my in a short amount of time. Her bold and unapologetic sense of style, her dreamy and haunting tracks, those powerbrows (no, really). But what drew me to her art in the first place wasn’t her art at all — it was her tics.

Tics are defined as “repetitive movements and vocalizations” and are often signs of tic disorders or Tourette’s Syndrome, a neurological disorder characterized by the presence of at least one motor (movement) and one phonic (vocal) tic. For many people, it begins in childhood. Though it is possible to repress tics after lots of practice and strategies to stop them from being so noticeable, they do not typically go away completely and can continue throughout adult life. It is similar to ADHD or autism spectrum disorder in that it is considered as neurodivergent.

In November of 2018, Eilish confirmed she has Tourette’s after video compilations of her own suspected tics were posted on Youtube. On Instagram, she released a statement acknowledging her diagnosis and the accompanying videos saying, “I’ve just never wanted people to think of [Tourette’s] every time they think of me.”

I can’t blame her; I spent over a decade of my own life trying to hide my own tics when I didn’t even know I had Tourette’s. The bizarre background of my own journey started when I was 8 at a church Christmas play. I was one of the angels at the manger, but my behavior looked demonic. I kept stretching my neck like a giraffe. I had momentary relief each time, but it inevitably came back again throughout the birth of Christ. Medical professionals often dismissed it as an overreaction on my parents’ part –even when the possibility of it being Tourette’s was suggested — or completely in my head, even though it affects 1 to 10 out of 1,000 children. By the time I got to a neurologist, I was prescribed Zoloft in order to control the anxiety disorder that made them worse and was told that the problem would probably solve itself. I hoped with the medicine that I could be a “normal” kid. What my doctor neglected to find out between the push for medication to eliminate the tics was that I did not just have a temporary tic disorder, but full Tourette’s Syndrome.

Between the pressure to fit in and to succeed, I didn’t want anyone knowing that I had tics. Or rather, I didn’t want to acknowledge to others or even myself they existed. If someone asked me why I blinked so much or something similar, I would launch into full defense mode, angry and in denial. “I don’t know what you’re talking about,” or the infamous — and totally effective — “No, I don’t!” became my go-to responses at school and extracurriculars. I would hate to watch videos of myself, mostly because I would be faced with the reality I never wanted to accept — that I was “weird”. Eventually, most of my tics subsided, which is a pretty common thing to have happen to someone with Tourette’s. By the time my senior year of high school hit, I was convinced it was a perceived problem I would never have to face again. I was relieved.

That is until I was 22 and in graduate school.  I was interviewed in a video as part of an annual class project. At the end-of-the-semester celebration, it was projected on a massive screen to the rest of the students and faculty in the program. I was met with images of me aggressively nodding, blinking, and fidgeting. I felt massive shame and embarrassment. Was this what my peers saw from me? When they heard my name, did they automatically think of those same, bizarre movements?

At this point, I knew I could no longer ignore it and had to face reality. When I ranted and cried to my boyfriend that night about how humiliated and insecure I felt.

“Well, maybe you have Tourette’s,” he suggested.

I didn’t take it well, mostly because I knew I would obsessively look it up on WebMD and similar sites. However, my annoyance was short lived and turned into a realization. When I looked up the signs and the symptoms, almost everything about my life matched perfectly. Initial tics begin around the same age my Nativity Giraffe Neck incident had occurred. I started to piece together evidence collection such as testimonials from my friends about what kinds of tics I had as well as requesting old medical records. After over a decade, I discovered I had been diagnosed with a tic disorder, anxiety, and OCD as a child, but no one had ever put the puzzle pieces together before that moment. When I brought the evidence to a new neurologist, I finally confirmed I did, in fact, have Tourette’s. I was relieved to know that my strange movements were not my fault. Most importantly, I finally gave myself permission to own a part of my identity I previously never wanted to face: my neurodivergence.

As part of my journey to acceptance, I began looking for stories similar to my own, including famous faces. Many of them were men, as studies have — so far — shown that Tourette’s affects more boys than girls during childhood, even though tic severity increases for adult women. I hadn’t heard of Eilish prior to seeing a Facebook post about her diagnosis, but I instantly fell in love with her unconventional style in music, in fashion, and ultimately in life. The fact that she has tics similar to my own were an added bonus. On her official Instagram statement (also featured in her highlights simply as ‘FYI’), she noted, “My tics are only physical and not super noticeable to others if [you’re] not paying attention.” When looking closely at the videos, it’s true. They tend to be subtle movements, but are unmistakably tic-like in nature. When she followed up in early March of 2019 about living with Tourette’s, she noted that she has learned to suppress her “bad tics” and that the public has not seen the worst of them. I’ve connected instantly with everything she has said about Tourette’s the way I connect with her art. Though she does not attribute her “goofy” personality to her Tourette’s, Eilish inspires me to keep owning both the unique and the tough aspects of Tourette’s and neurodivergence in my day to day life.

While it is by no means Eilish’s responsibility to be a constant voice in the Tourette’s community or to contribute anything else about her experience beyond what has already been shared, any additions to the conversation will continue to do a lot for those who were like me — searching for permission for us and our tics to not only exist, but thrive in a world that tells us to shove them away. In the meantime, I’ll be enjoying her new album.


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