On May 24, 2017 I am getting double jaw surgery, and I am terrified. Not so much terrified of the surgery – although it is going to be a huge one and, from what I’ve read online, the most painful surgery I’ve had yet – but of the year I have to wait in anticipation of the surgery, without the ability to do anything about it. Every day that I wake up with my face and eyes so swollen I can barely see, I can’t do anything but wait for the swelling to go down. I fall asleep each night afraid of what I might wake up to in the morning, and half of the time I can’t recognize myself when I do wake up. Every time I throw up or almost pass out from the lack of oxygen because of my jaw positioning, I can’t do anything but pray that this year will pass quickly. Then I remember not to pray for that, because I don’t want to miss out on yet another year of my twenties. Eventually I always find myself wishing that I had gotten the surgery years ago, avoided all the pain, illness, and bullying that came with my crooked jaw, and enjoyed my teens and early twenties fully. Finally I remember that even if my jaw had been corrected, I’d still have countless other health problems getting in my way.
My anxiety about it all was so bad this morning that I spent two full hours curled up in a ball, unable to move. For a person that has spent her whole life trying to gain some sense of control over her body and her health (without success), the idea of waiting an entire year to end the daily pain and swelling I have with the proper surgery, and furthermore not knowing what I might look like after said surgery, is a nightmare. But this is a journey I must find my peace with, and I know that. I am working on it. I have to let go and focus on enjoying the moment, or I will miss out on a beautiful year of my life, and I don’t want to miss out on any more experiences than I already have because I have an illness. I do not want to treat this year as another transition period, as a limbo in which I’m waiting to start living. I have to embrace this year for what beauty it can bring and live this period of my life as it’s own special moment. Maybe it is a unique opportunity for me to grow, to learn the beauty of true patience, to have faith in timing, and to put my trust in greater powers than myself. To stop wishing I could go back and make up for the time I’ve lost, or the things that could have been, if I hadn’t been born sick. To challenge myself to choose living joyously over constantly striving for a level of perfection my body won’t allow me to achieve. This year is an opportunity to learn how to love myself and to love the life I am creating, rather than wishing I had been dealt a better hand and resenting the body I feel prisoner to.
But TMJ can’t be that bad, right? Jessica you’re so dramatic. It’s just a little clicking in your jaw every now and then.
If you’re reading this because you, too, have to get double jaw surgery, you know that severe TMJ can be life altering. For Part 1 of my journey to double jaw surgery, I want to give you some background on my history with TMJ and how it’s impacted my life.
I struggled with jaw problems as far back as I can remember. When I was 9, my jaw locked open for the first time. I was taking a big bite out of a 6-inch from Subway when my jaw locked open and stayed there. Frantic, I tried to tell me sister what had happened, but all I could do was gargle sounds from the back of my throat. Finally, I grabbed a notecard from the cupboard under the wet-bar and wrote “Can’t close my mouth!” on it. Home alone and unable to drive ourselves, my sister and I eventually got ahold of a neighbor who raced me to the dentist’s office, where my dentist popped my jaw back into place. I can still remember the immense feeling of relief. From then on, whenever my jaw would pop out of place, I would just pop it back in myself.
By age 10 my TMJ-induced insomnia had become dysfunctional, and continued that way through college. It was very hard to fall asleep with the chronic pain and tension in my jaw, and my own pain would wake me up every few hours. Only in the last two years have I been able to get my insomnia under control with a strict nightly regimen.
When I was 11 years old, my middle-school crush was standing next to me during a summer camp water-balloon toss. I saw him staring at me for a time, and felt excited. He must think I’m cute. Nope. After a while, he pronounced with a look of disgust, “You know, you look exactly like a fish.” That night I spent a good thirty minutes looking at my face from a side angle and cried myself to sleep. Before then I had never even noticed how bizarre my profile looked compared to everyone else. I really did look like a fish, or maybe more like a warped Muppet in my own humble opinion. My missing jawline was only more exaggerated by my big fat lips and my bug-eyes. And as I aged, the bullying about my looks ensued. Girls would taunt me by sticking out there lips, widening their eyes, and drawing in their chins. The nights I spent crying myself to sleep were on a steep upward slope. It didn’t help that my pupils were constantly dilated from an autonomic disorder. They don’t respond to light correctly so by age 13, the rumors began that I was on drugs. The other honors kids were smart enough to stay away on their own, and the standard kids’ parents forced them to.
The chronic headaches from the tension in my jaw started around 14. By 17 these headaches were full-blown, angry migraines, and the brain fog was so bad sometimes that I struggled to hold a conversation. The fatigue from the way my jaw was cutting off my proper oxygen flow was debilitating, and it didn’t help that I was barely sleeping. My jaw clicked constantly when I was chewing food, and eating was absolutely exhausting. By 18 I was drinking shakes and smoothies for half my meals. I still am. The lack of chewing properly when I do eat meals certainly doesn’t help my Gastroparesis.
Throughout my teens, I was constantly at the dentist getting cracks sealed over. I had a mouth guard to wear when I was sleeping, but it didn’t seem to help all the daytime damage because my bite was so off.
At 19 I had gum recession surgery. Not a fun way to spend your college spring break. But the gum graph didn’t “stick,” because the problem stemmed not from actual gum recession, but from the fact that my teeth were being pushed upward to meet my bite properly. I switched dentists three times because I was accused of being bulimic since my teeth and gums were so warn down. I flossed and brushed gently twice a day without fail, but this made no difference.
At 20 years old, I got my second set of braces. It was the least of my worries, just a bit of a self-esteem buster for me, who already had very low self-esteem from years of bullying about my looks.
At 21 I fell bedridden with POTS (Postural Orthostatic Tachycardia Syndrome.) The lack of oxygen due to how far back my jaw is plays a big roll in the severity of the illness. I spent the next three years fighting to stand back up and live my life with, and despite, POTS.
At 24 I was finally healthy enough to get an internship. That’s when it all really exploded with my jaw issues. I woke up two days before I was to start at my internship with my face hugely swollen and my eyes welled shut. I had struggled with moderate swelling from time to time, but never this bad. At first I thought the swelling must be from an allergic reaction. When it did not go away for two weeks, I sought answers. After seeing every allergist, immunologist, endocrinologist, and dermatologist from here to Mayo Clinic with not a hint, I found myself reading an article about tooth infections leading to facial swelling. So, one Friday morning, I called a random local dentist that came up first on Yelp. I sat down in his chair and within a few minutes he had the answer. The swelling stemmed from severe TMJ. From there my journey to finding the right jaw specialist for my case began.
The first jaw doctor I went to took some X-rays and explained that my left jaw was now bone-on-bone, and had severe recession from years of TMJ damage. He suggested a $1500 oral orthotic to sleep in at night, and a cheek implant to correct my crooked face. But I wasn’t looking for an aesthetic band-aid, I was looking to fix the problem and prevent further damage.
The next doctor, well, I’m pretty sure he was a fraud. He convinced me that surgery was far too “dangerous” and something that I should never do. Instead, he suggested creating an oral orthotic that I was to wear 24-hours a day, and that I had to get “adjusted” every two weeks. By this time I was desperate and afraid, and I am ashamed to say that I bought in. 8 thousand dollars in, to be exact. For three months I walked around with a half inch thick piece of plastic between my teeth with a terrible lisp, and the pain in my jaw only increased while the swelling continued. Every two weeks I drove an hour and a half both ways into Los Angeles to get my orthotic “adjusted,” which really meant the doctor watched television next to me while he mindlessly sawed down the device I had paid my left arm for. No joke guys, he wouldn’t even be looking down at it, he’d just be watching the TV. I have had my fair share of poor healthcare, but this was the single worst experience I have ever had. I truly believe he was a scam artist, and have since learned that he has been sued numerous times for just that.
Six months, two specialist, and 8-thousand-waisted-dollars later, by grace and through faith I found a brilliant jaw surgeon. And also through my new dentist, Doctor Couch, who is really to thank here. He took one look and said, “This is a job for the master.” Two weeks later I met with the incredible Dr. Michael Gunson, and after an extensive and informative 4 hours at his office, I had a proper diagnosis and a real plan that included a year of braces and a double jaw surgery. Dr. Gunson explained that those big lips I’d been bullied for really were my arch nemesis; they’d been masking the severity of my jaw deformities. By the following Monday, it was out with the pointless orthotic, and in with braces.
And so that brings us to today, where I spent the better half of my morning curled up in a ball living out every silly nightmare I could think of imagining the what-ifs of my jaw surgery. I am now on month three of having braces. As much as I truly and deeply feel blessed to finally be in safe hands taking care of my health, I am only being honest when I say that I hate having braces, and I hate waiting for surgery.
My face is still swollen often, but at least it is on and off now with some days much worse than others. The lower third of my face is constantly numb and tingly. The braces are very painful this time around because of my Fibromyalgia, and no matter how much wax I use, I have ulcers in my mouth because my tissue is so thin from my EDS. Sometimes my cheeks are so swollen and my mouth so numb that I can barely speak. On the good days (when I’m also not having any autoimmune flare-ups), I pose for blog pictures and enjoy a night out with friends. On bad days, I sometimes turn down invitations to go out even though I’m feeling well, because I’m embarrassed by my swollen cheeks, my braces, and the whopping bald spot on my head, thanks to a spurt of Alopecia Aereata. I turn 25 next week, and I am not planning to celebrate this year because I am embarrassed about my current physical appearance and frustrated that I have missed out on so much time in my twenties.
I know that physical appearance should not in any way be important to a person’s self esteem or their enjoyment of life, but most days I feel like I can’t even recognize myself anymore, and I never have time to get used to one change before another hits, so it can be very wearing. I am doing my best to completely disassociate my confidence from my physical appearance, and I am getting better every day, it just takes time. I think it’s an important life lesson for me to learn, so I look forward to embracing the learning opportunity over the next year. I’ve gotten to the point where some days I do not look in the mirror. I put on tinted moisturizer in my room where there is no mirrors, slap on a Yankees cap, and head out the door before I can talk myself out of going somewhere.
I will make it through this, and I will rack up as many fun memories as I can along the way. I will do my best not to miss out on any experiences because of my jaw. And I will count my many, many blessings. The truth is that what I look like is not important. What is important is that I am doing what’s necessary for my long-term health. I am very excited for the life that awaits once I can breathe better, sleep better, and end my chronic migraines, but I am also determined not to put my life on hold again for when I get better. I will do my absolute best to live this moment to the fullest, whilst also looking forward to the next!
I hope those of you reading this who are suffering through the long and trying process of preparing for jaw surgery know that you are not alone, your struggle is validated despite what others who do not understand chronic pain might say, and that there is a beautiful light at the end of the tunnel, and a beautiful journey to learn from along the way.
In my next post about my surgery journey, I’ll explain all the details about my full diagnosis and the surgery I am getting. Feel free to leave any questions you have about my experience in the comments, and I will be sure to answer them in my next post!
With great love,