The Mighty Logo

Turning 21 as Someone Whose Body Has Never Quite Felt Their Age

The most helpful emails in health
Browse our free newsletters

Twenty-one is a milestone age. It should be, it signifies one of the final stages of advancing into age-associated adulthood. You have some distance between you and your teenage years now, actually qualifying for the “early 20s” age group. It comes with a lot. In the U.S. it comes with privileges. But what is 21 for the person whose body has never quite felt their age?

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Well, obviously 21 is different for everyone. The actual day will have a different meaning but in the US, when you hear someone is turning 21 the next question is usually about who you’re going to invite to the party or go out drinking with, what your “first legal drink is going to be.” But what about when you not only do not drink, but you cannot drink. How do you celebrate adult birthdays with adult friends who may or may not get it? I asked myself these questions for weeks leading up to my 21st birthday. I was unsure of how I was supposed to approach it. But as with every day as an EDS zebra, every day comes with its own surprises, and my birthday was no different.

We had decided that we would go to see a movie on the night that they have the student discount (the day before my birthday). I woke up in the morning and while chewing my pancakes, one of the splints placed on my teeth 10 months earlier to stabilize my jaw decided to pop off without warning (leaving the cement still on my teeth, by the way). So, the injury that I had incurred 10 months earlier and that had resulted in my being unable to eat anything more than smoothie or soup consistency for over eight months was now dangerously close to recurring. With every movement of my jaw, I heard the popping and felt the sliding that had led me to an operating room. So, I spent the morning trying to figure out how to put it back in on my own. Then trying to figure out if I could get the other one out to at least get my jaw even, to reduce risk of injury. No luck.

I went to class and I bore my chronic hypoglycemia with apple juice, being unable to chew without injury. I spent the afternoon trying to find a dentist in the area who might be able to help me out, I found several. Between classes, I called and called and called. Not a single office of the 10 answered their phones. I went to the pharmacy to buy some temporary crown cement to see if that would be able to secure the splint once more to allow me to eat. I ate some mashed sweet potato, because I didn’t have to chew it, my brother secure the splint back to my teeth and I left it to dry for three hours, as instructed. We went to the movies. It was a lot of fun. I went to sleep.

I woke up on my birthday and I made myself some breakfast, hopeful that I would be able to have a meal. My first bite of pancake dislodged the splint. So, again I spent all morning calling dental offices, again not getting any answers. I called an emergency dental office who refused to see me because I had received an operation on my TMJ in the summer, so they sent me to an oral surgeon. When on the phone with them, all I could get was an automated message or someone who could neither confirm nor deny whether or not they had the tool required to remove the remaining splint, but the $150 payment would be required upfront either way. I went to class. I went to physical therapy. My physical therapist gave me the phone number of her own dentist. I couldn’t be seen until the next day.

I went to class again. I went to a meeting. I went to get dinner in hopes that I would be able to eat it. My friends came over to tell me stories and watch videos on YouTube with me while I drank sparkling cider. I couldn’t eat any of my dinner. But I drank the sparkling cider. It was fun. It was exhausting. It was exactly what my 21st birthday should have been like.

It was not the pomp and circumstance that you see in movies or on social media of people capturing their best and brightest moments, but not their deepest and darkest. It was pervaded in every way by my Ehlers-Danlos syndrome and associated conditions, and the life that comes with disability and chronic illness. But it also signified another year. Another moment. Another fight won. For me 21 is another stripe. Only my third even knowing that I had a condition, not thinking that it “was all in my head.” For me 21 is another year of liberation within the confines of my condition, and that’s exactly what it was meant to be. It doesn’t need to be what anyone else wants it to be or thinks it should be. It should be a moment to capture you. Twenty-one glorious years of a fight well-fought. And whether it’s champagne or sparkling cider, cheers to another fight to be fought.

Originally published: September 9, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home