His TMJ story is both common and unique. Common, because he shares in the suffering, both emotional and physical, that many others afflicted with this disease endure. Unique, because of his life situation.
Who is Bernard? He is a twenty-nine year old who is in prison. His TMJ story began in 2013 when he was prescribed a medication that he took for less than three months. The medication permanently locked his jaws. Of course, in 2013 no one in the institution had the knowledge to make a diagnosis of what was actually causing Bernard’s unremitting pain. It wasn’t until the end of 2019 that he was finally told he had TMD. That’s when he contacted The TMJ Association and started a dialogue with Terrie and Deanne.
So, what are the experiences that Bernard, in his unique situation, has in common with the vast majority of TMJ patients? Let’s look at them and use Bernard’s own words to describe them.
Effects of the locking and the pain: “It’s an unending stress from the things it forces me to do, like holding my hand underneath my chin to yawn with a closed mouth. My mouth comfortably opens only a quarter inch, but can be forced to about a half. I feel ashamed eating around others. Even if my mouth could fully open, I would still be self-conscious, because it has no lateral movement. It is embarrassing to cover your mouth and tell others to not look while you are eating, because your food is always falling out.” Imagine always having to take your meals in a room full with others, especially fellow inmates, who may not be inclined to be empathetic. Bernard also mentioned that he often cannot finish his meals in the allotted time, because he must eat so slowly.
In addition to the physical effects, Bernard, as is true of many others with TMD, has little emotional support, either from family, other relatives, or the medical staff that he deals with. He writes: “When it comes to family, my dad is the only one supportive. We may only talk a few times a month, but I really love him.”
In terms of treatment, the only option that has been offered to Bernard is radical surgery. The doctors want to “cut my face open, remove a section of my jaw bone, replace the bone and joint with titanium and insert nine screws into each jaw.” They cannot predict how well it will heal, or how long the surgery would alleviate his pain, so that the surgery may someday have to be repeated.
Many TMJ patients can relate to these common realities. Bernard, however, has additional challenges. An inmate cannot choose when, or even if, medical appointments will occur. “On the days I have appointments, it is always a surprise, because we are never told until we have to get ready. On the morning of appointments, staff will wake me up at 4:15 and we leave shortly after 7 AM. While it is a relief to be away from prison, I cannot rid myself of the thoughts that I would rather be anywhere than where we are going.” The last doctor’s visit he had scheduled was refused because he wanted to bring his notes with questions for the doctors, because he like many, gets nervous and didn't want to forget the questions he wanted to ask.
Unlike most TMJ patients, Bernard does not have access to treatments that could alleviate his pain, such as hot or cold compresses, an extra pillow or a soft diet. He says: “They [The TMJA] actually sent me a caddy head wrap [hot/cold pack] that was confiscated a couple months later. My selection of food is limited. Every day, I eat beans, oatmeal or peanut butter.” He has to get special permission to receive ibuprofen.
Being in prison brings other risks. “Every year I go through spells of depression and sometimes become easily angered. What if I lose my temper and someone punches me in the face so hard that my jaw unhinges, then what? Emergency surgery?”
All patients worry about surgery, but in Bernard’s case, with the radical jaw surgery that the doctors want him to undergo, there is a significant probability that there could be facial scarring. Bernard asked about this, and was shown an internet site depicting how people could possibly look after surgery. There were no black people among those examples. “I knew African-Americans are prone to keloids, and, since no black people were shown, it means that the surgery probably healed in an undesirable way. At that moment, every positive thought disappeared.”
Now, you have met Bernard. Although his life situation is a unique one, he shares the experiences, frustrations and anxieties of many of his fellow TMJ sufferers. His closing paragraph is worth noting: “The TMJ Association is my main source of support and information. Deanne and Terrie have been something special. I am deeply appreciative of everything they have done. These are the words of a prisoner serving twenty-six years, starting at age twenty-two. I thank you all for devoting your time to reading my life.”
Bernard has indicated that he would welcome cards or notes of encouragement. If you would like to send him one, you can direct it to The TMJ Association, C/O Bernard, P.O. Box 26770, Milwaukee, WI 53226 and we’ll see that he receives it.