Tom Rohe used to speak for a living. Now he hopes that doctors will give him back his voice.
It's been a little more than a year since I last communicated with Rohe, the former commercial voice-over artist whose bizarre and painful saga began in late 2009 after a wisdom tooth extraction. Soon after the surgery his jaw suddenly began to click. Then, without warning, his voice began to slur. The muscles in his face took on the appearance of a person who had had a stroke. By July 2010, he could barely speak at all.
He saw doctor after doctor, as he told me in late 2011, but none of them could figure out what was wrong. Then one day, after taking an Ambien to help him sleep, he suddenly – and inexplicably – regained the ability to speak. Until the drug wore off, that is. Then it was back to his impaired speech.
Today, Rohe still takes low-dose Ambien to help him speak for a few hours at a stretch, but he tells me that he is still in terrible pain and doctors still haven't figured out a solution. "Right now I'm in constant pain whether I'm speaking or not," he writes over email. "My entire day is spent with severe contractions on my neck and everything above." He calls the pain "unbearable," but at the same time he maintains a surprisingly positive attitude. "It's difficult when you feel happy and your face indicates otherwise," he writes. "Perhaps interpretive dance is in order?"
Although his voice-over work is now in the past, he has adapted by throwing himself into photography, videography and web design — skills he started picking up just for fun 10 years ago. He says the opportunity to improve his photography skills has been one of the "benefits that have come along with this nightmare." He has started shooting video for Sunspots, his voice-over company. Last year he even photographed a wedding. "It's exciting to feel like another career is starting if I want it."
Still, his income is nothing like what it once was, and each doctor visit that doesn't yield results brings disappointments. After a new dental mouthpiece failed to help, he wrote to me, "Another couple thousand out the window which I can no longer afford. Trying to stay upbeat tonight, but upbeat took the night off."
Another near-miss came last year after a doctor injected Botox into Rohe's mouth. "There wasn't any immediate change," he says, "but around five weeks later I could almost speak normally." Sadly, the effect wasn't permanent. "It lasted for a few hours every day for a weekend and then it was gone."
Rohe continues to post online videos about his condition and says he has met a few other people who suffer in ways similar to him. "One woman locally had a crown put in and within weeks she was speaking like I did in first video. The nice thing was that we spoke on the phone and I could understand her. She has that desperation that I had. I tried to lift her spirits and let her know things will change. It will be okay no matter what."
You can see Rohe's latest video, under his professional name of Tom Cassidy, where he shows the difference in his speech before and after taking Ambien. He hopes that other people with similar conditions — or doctors with thoughts on how to treat it — will see the video and reach out to him with possible solutions.