Awesome Disabled

I got Botox the other day. But not for the reason you’re probably thinking.

Botox was suggested by my dentist about the sixth time I refused a night guard. I’m a clencher and a grinder, and my teeth are getting worn down from all the nighttime grinding. But I won’t wear something in my mouth at night because it interferes with my sleep, which is my biggest health concern.

I explained this to my dentist, who seemed to understand. Sort of, maybe. I refused the night guard, in any case, and asked for alternatives.

I have found that it can be difficult for dentists to see a person’s whole health situation, probably because they spend their whole day staring at people’s grody teeth. Still, I know how important dentists are, and how necessary dental care is to a person’s overall health. I have been with my current dental office for a decade, and am very happy with them. (Honestly, spectrumy folks, one of my best pieces of advice is to find and keep good care providers. Having someone who has your patient history, and who can remind you of upcoming appointments makes a HUGE difference.)

I have a history of panicking at the dentist, and they know about my spectrumyness. Obviously everyone is on their own disability deconstruction journey, so care fluctuates a bit based on the individual.

This Botox appointment was as awkward as all my other dental appointments. The hygienist was confused when I said I didn’t have pain.

“So, do you have jaw pain or tension headaches?”

“Not really.”

“You don’t?”

“Well, like, probably. But I don’t notice them, because I have so much other pain.”

She tilted her head. “Usually, we offer Botox for issues with jaw pain.”

“I know. I was told that this was an option for clenching and grinding at nighttime.”

“Do you have pain from the clenching and grinding?”

“Probably.”

These were not the answers she was expecting, but she continued with the consultation. I did another version of this conversation with the dentist.

Eventually I said, “I have autism and complex chronic pain. Realistically, I probably have a lot of pain from my jaw, but I don’t notice it, so I can’t quantify it.”

(This is actually an issue with medical care in general, because “pain” is the main symptom for receiving care for most things. For us spectrumy folk, we experience pain in unusual ways– either hypo- or hyper-awareness. When the amount and type of pain that the patient should be experiencing for something was calibrated by neurotypicals, it makes diagnosing the issue much more difficult to track it down for spectrumy folks. Thank you for coming to my TED talk.)

Anyway, they agreed to give me Botox, despite me not complaining of pain. They could see the wear on my teeth, so figured it was worth a shot. Plus, my benefits covered most of the cost, so there really wasn’t much risk. I know Botox dissolves within a few months, so there really isn’t much chance of long-term harm. Also, I’m low-key obsessed with the Botox couple. I love an elegant solution to a complex problem, so if a few needles in my chin will make a difference, I’m willing to try.

They marked up my face like in Nip/Tuck, and then slapped on an ice pack for numbing. Each side was about 5 or 6 needles, which was an unhappy moment for Amy. But it was over quickly.

I didn’t know what I expected from getting botulism shot into my face. My jaw felt light, and remarkably numb. I tentatively moved my tongue around my mouth. I could chew, and could open and close my mouth pretty much normally. So far so good.

I had to sit upright for four hours after the appointment, so that the Botox wouldn’t migrate. After that, it was pretty much back to normal. I wondered how the first night would go, but I didn’t really notice any difference with my sleep.

What I did notice was that I didn’t feel stressed when I woke up the next morning. My mental landscape had more cheer and less dread than usual. I wondered why.

Then I thought: maybe it was the Botox. I realized that, for the first time in four decades, I woke up without my jaw clenched to within an inch of my life. There were probably some physiological benefits to the loosening of my jaw, but, for me, the biggest effect was mental clarity.

Research has shown that smiling improves your mood. I feel like it’s not a huge leap to think that clenching your jaw makes you feel stressed. Because the jaw is an incredibly strong muscle, having it constantly engaged could make your brain think that there’s a threat. I notice that, even if a stressful event happens, my brain notices that my jaw isn’t clenched, and so thinks it must not be too bad.

It’s a side-effect that no one could have anticipated, but it’s made a huge difference to me so far. A major cornerstone of my journey to better health has been to explore the relationship between my body and brain, and to try to heal it. I did not anticipate that Botox would play a role in this. But why not? I’ve learned that sometimes the best solutions are the wacky left-field options. The more options we explore, the more we can find something elegant.

Although I feel like I look like this:

I’m feeling better about things. Injectables aren’t my favorite thing on a good day, and going to the dentist’s office to get a bunch of needles is pretty close to the end of my list of things I enjoy.

All told, I’m glad I tried it. I feel like with my complex presentation and multiple complex disabilities, every option needs to be on the table. I’ve spent a lot of years with substandard care due to the panic and overwhelm I felt when it comes to seeking help. Honestly, having my kids made a huge difference for me. I had to get consistent care for them, and heck, while I’m there, may as well get some care for myself.

I am so lucky to have long-term care providers and a robust benefits plan. I know that I can take credit for a good amount of this, because I’ve worked hard to find good people. I’ve been with my GP for 20 years, and my dental office for 10. I have a physiotherapist and a therapist as well. The longer I’m with someone, the more they understand me and can work to provide care that works for me, with all my quirkiness and weird hangups. And I also don’t stress about going to see them.

Knowing who my providers are as people makes me feel more comfortable seeking care. And I feel like they see me as a person, which means that they’re willing to look at non-standard options. Like when I started crying and had a panic attack at my physiotherapist’s office when she asked me to do a hip exercise.

“Okay, new plan,” she said, losing no composure. “Let’s try something else.” Because we’ve spent time exploring my bumpy medical history, she knew that stuff affected me in ways that she might not be expecting.

Fact is, I’ve got this body and this brain until the end. I may as well try to make the journey as comfortable as possible. Even if it means trying Botox to unclench my jaw.