Not all disabilities are visible, and it’s difficult for people to empathize with someone who may “appear” normal.
The dictionary definition of the word disability is “a physical or mental condition that limits a person’s movements, senses, or activities.”
I appear normal. I credit my fabulous surgeon with the fact that unless a person looks very closely, he/she will not see the scars that surround my face and neck. In total, I had close to 100 external stitches. Four of the bones in my face were removed and at least eight muscle were cut. In addition, my nerves were affected. With all of this facial trauma, I recovered physically and look just like any other person.
My normalcy fools many of my friends, family, and colleagues. Even though I am doing fantastic by bilateral Total Joint Replacement (TJR) standards, I still have my struggles. The surgery is to improve function, and it did. I can now open my mouth to a 38 which is amazing. I still teach and appreciate the fact that I’m able to work a full time job, and teaching English which involves much lecturing and class discussions. There are many TJR patients who aren’t able to work. Though I do recognize that my time teaching English is limited as I can't take the pain and the stress it causes my jaw. Even my doctors are surprised I am still doing it, and recommend that I change my position within the school.
Attempting to fit in and be like everyone else can be physically demanding and exhausting. Talking too much causes migraines, so I’m in intense daily pain. In fact, even if I go out and am laughing with friends, I typically end up in bed miserable. Having fun comes at a cost. Sometimes it feels as though happiness comes at a cost.
My left implant is not functioning at 100%. I have pulsating tinnitus, and over using my implants causes my muscles to swell and the noise to increase. It’s difficult for me to sleep without the aid of a sleeping pill. When I talk too much, I become distracted by the noise because it’s loud. Granted, I’m the only person who can hear it.
I also have chronic dry mouth. This may seem minor, but have you ever tried to lecture when you’re mouth feels like sandpaper? Try reading to a class so they can enjoy a story when you don’t have an ounce of saliva? Some might suggest drinking more liquids, but that won’t help. This is a side effect of the TJR. I sometimes stumble over my words and it’s like my mouth is not working the way I want it too.
And, of course, the worst of the pain is the never ending migraines. Talking, lecturing, laughing, and crying increases the magnitude and frequency of my pain. It’s excruciating. When I don’t use my jaw as much, I feel much better.
Obviously, I am on the never ending soft/liquid diet. Every so often I cheat only to end up in bed regretting that decision. People often ask how I maintain my weight, and it’s my TJR diet. I only chew one meal a day. Lunch is typically something extremely soft/liquid and dinner is soft food. I tend to be hungry. I’m use to it. It’s my new norm.
The integrity of my implants is of the utmost importance to me; therefore, I will do everything in my power to make them last as long as possible. I recognize that when it’s time for a new set, the old ones will be removed and my jaw will be wired shut. Because I have FDA approved titanium implants, I’ll need to be placed back on the list and wait for approval yet again. This will take months, and I will be wired shut and without joints in my face. Once approved, I’ll have to endure another lengthy, painful surgery. Other patients who have had multiple TJRs state that the pain and healing becomes worse with each surgery. Honestly, I’m horrified at the thought. The entire explant and reimplant process is terrifying. Even though I hope that I’ll never experience this, I understand that I probably will. Implants aren’t meant to last forever. And from my understanding, titanium jaw joints don’t last as long as the nickel. I will do everything in my power to help the integrity of my implants.
Luckily, I’m on several websites with other severe TMJ patients and I know that I’m not alone. We support each other with kindness and understanding, which is fabulous. I also travel to maintain my sanity and inner peace. I just got back from Barcelona :)
The point of this is to not judge a book by it’s cover. Many people are struggling with ailments that may not be visible.
