Set Phaser to "Mask": Interview with William Shatner
A long-time sufferer of tinnitus, William Shatner discusses finding treatments and managing his condition.By David Fabry
His Wikipedia page is 14 pages long, testimony to his popularity and the passion of his multi- generational fan base. William Shatner, 79 years young, trained as a classical Shakespearean actor and enjoyed early fame as Captain James T. Kirk on television and in movies for the Star Trek franchise. Although many actors might have been satisfied being typecast as one of the most iconic characters in television history, Mr. Shatner went on to win critical and commercial acclaim as musician, author, producer, director, and celebrity pitchman. He also owns a 360 acre horse farm in Kentucky, where he raises and shows American saddlebreds and quarter horses. His musical career spans over four decades, and his "spoken word" interpretations have become celebrity interview series (Raw Nerve) airing on the Biography Channel; his distinctive voice, cadence, and disarming delivery are apparent as AT sits down on the couch for a one-on-one with the legendary leader of the USS Enterprise.
AT: How are you?
WS: So well.
You have been a busy man. Thanks for agreeing to speak with us for a few moments today. I know that you have suffered from tinnitus for a long time; you have commented in numerous interviews about the impact it had on your life. I am not sure that a lot of people realize that there are more people with tinnitus than there are with hearing loss, and yet it is often an underappreciated disability—until it happens to you.
Yes, I have talked many people down from very serious actions myself over the years.
You bring up an interesting point. Although many people may experience tinnitus, the degree to which it impacts their lives ranges from a mild nuisance to completely disabling. In fact, it is one of the few "life and death" situations that audiologists encounter clinically. People sometimes make jokes about ringing in their ears, and often dismiss it, but in its most serious form, it is no laughing matter. Plus, the prevalence of tinnitus is increasing, both in adults and children, due to the rate of nonoccupational noise exposure (e.g., personal music players) that introduce more acoustic trauma than my father experienced working in a paper mill back in the '60s and '70s.
Did your father have hearing loss?
He did. The combination of noise exposure in the paper mill, military service, and growing up on a farm in Wisconsin caused some hearing loss.
Did it affect your relationship with him?
It did, and unfortunately he died in his early 50s and never wore hearing aids. I regret not being able to do anything about it, because he was gone before I ever practiced audiology.
How about you? Have you suffered from hearing loss in addition to the tinnitus? Audiologists are fond of quoting Helen Keller, who said, "Blindness separates us from things but deafness separates us from people." Have you felt the isolation of hearing loss?
I did have the occasion when I first discovered that I was hearing this noise, thinking that external sound was affecting me. I would block my ears completely hoping that I could do something about "saving" myself. And so, for short periods of time, I understood what it was like to be deaf. I realized that sound gives you a 360 degree view of the world, whereas sight is only on a binocular attitude.
Yes, in many ways, hearing is a more primitive survival sense that provides the ability to localize and escape predators….
(laughing) Or a car running over you, or your wife throwing something at you if you don't listen! That's exactly right. I understood how important that sense of hearing is, that we take for granted when we don't have it.
Tinnitus is often an early warning sign of acoustic trauma that can develop into hearing loss. In rare cases, it can also indicate the presence of a brain tumor. Did you seek medical attention for your condition?
Oh sure. I went to the House Ear Institute early on, and spent time with Dr. House, the old man, and we had tears rolling out of our eyes because he too suffered from tinnitus. Our tears were tears of loss, because we realized that we would never hear a silent night again or hear the crickets alone. They would always be mitigated by this "wrenching" sound.
You have been quoted as saying that tinnitus "robs people of silence." I think that statement really captures the essence of tinnitus. Everyone who has had the opportunity to go to a very quiet place— either in nature or in a sound-isolated booth—can understand the significance of being robbed of silence. As a recording artist, you've probably had a similar experience. Ironically, in those quiet environments, many of us experience "fleeting" tinnitus that goes away after a few minutes. As a person who suffers from tinnitus, however, you are deprived of the sensation of "absolute" silence.
I don't know about "fleeting" tinnitus. I would think the definition of having the condition is that it is there 24 hours a day. Part of the sound is very harsh. It isn't a "kind sound"—it is a sound that you would not choose to hear if you had total hearing. If you were to hear this sound, you would go to the source and turn it off or get rid of it in some manner. You'd call whoever would be responsible— the TV guy or the radio guy—and say "turn that thing off, I can't stand it anymore" because it is such a harsh sound.
And for a large number of tinnitus sufferers, the biggest part of the problem is loss of control— the fact that you can't call somebody to turn it off.
You've grasped it exactly. It also leads you to think that there is an element of "insanity" there. That there is something inside your head, as I now understand, that may be localized to an area of brain activity. The fact that there is an element of lack of control barely expresses the panic that one feels when you first discover it, and then from time to time, even though you are accustomed to it. The panic of feeling that "I can't do anything about it," and realizing that the only time that I will ever hear silence is when I die. That is a sign of your own mortality, really. You're constantly reminded of the fact that this illness has no cure.
Interesting that you bring up the issue of self-doubt—why am I hearing these aural hallucinations? Throughout history, there have been some rather celebrated suspected and confirmed cases of tinnitus. They thought Van Gogh suffered from tinnitus to the point that he thought he was insane, and subsequently took drastic measures to rid himself of the problem.
I know. We also don't know what biblical prophets heard, sounds that they likened to God or some religious experience.
I remember reading that the onset of your tinnitus was on the set of Star Trek—right?
There was an explosion—both Leonard Nimoy and I were beside it, and we both had an immediate ringing in our ears. He has tinnitus to a much lesser degree than I do. But, now my thought is that maybe it is just age, and the dying cilia just sort of "fell off" because of the gathering years. Although it is much sexier to say that there was a huge explosion and that I came away unhurt except for my ears.
In your case, it is different from some tinnitus suffers in that there often isn't a specific event tied to the onset of their tinnitus. Rather, it starts insidiously, and in many cases, a person would come to see me or my ENT colleagues to rule out a brain tumor, because they are worried that the sounds will kill him. In your case, because the tinnitus came on abruptly, did you avoid that stage completely?
I did go through that phase; I went somewhat hysterically around to anyone I thought could help. I was even fit with a hearing aid. When I was screwing it in my ear, it had the feedback, which scared me so much that I thought it would make my tinnitus worse, and I threw it away.
Very interesting—what treatments have you found successful?
The only treatment that I have found success with for me is habituation.
Like tinnitus retraining therapy.
Exactly—I wore the noise maskers, and they said "wear them for four to eight hours a day." I wore them for 24 hours a day. I never took them off—even when I went to sleep at night. After three months, I began to lose my fears somewhat. Ultimately, I went to see Dr. Jasterboff at the University of Maryland, where he was at the time.
Yes, now he has moved on to Emory University in Atlanta. How did that go?
He, too, has tinnitus, and he joked that he never hears it unless he talks about it, and of course now he talks about it 12 hours a day. Dr. Jasterboff talks a lot about the "cycle of fear," with the fear increasing, like chronic pain. In turn, it increases the awareness sensitivity to the sound, so it sounds like it is getting louder. After three months of hearing a sound that was somewhat louder than my tinnitus, I began to lose my fear of it, and I realized that I wasn't going to go down. I realized that I could still sleep—that was another big thing: "will I be able to sleep, will I be able to perform my work?" I began to understand that I would be able to go on and the habituation techniques helped considerably. When I put the aids aside, I gradually became accustomed to the condition over the years. Initially, on that test they give you where it says what percentage does tinnitus affect you, I put down 95 percent—it's my whole life. It was at the time, and now it is negligible, I don't hear it unless I'm talking about it.
How long did it take to get to that point?
Well, as I say, it originally took about three months to where I began to understand that I need not panic. I've had a concept in other aspects of my life where I've tried to achieve a unity with whatever it was that I was doing, either as an actor with an audience, or in many cases as a competitive horseback rider with the horse. I began to understand what a "Zen" feeling of the world around you is like. And I used that to try and incorporate psychically— spiritually—the sound that was in my head, and being at one with it because it was part of me. Rather than rejecting the condition, holding it at arm's length, I tried to cradle it, and sometimes literally thought about this is my sound, this is in my head, and it's part of me. I can live with this—there are many sounds that are louder. I can hear the television on in the bedroom at night—that's louder than the sound that is in my head. I'll be able to banish this, and gradually I began to accept the fact that this was my condition and I needed to embrace it.
It is fascinating that you describe owning it and then you can embrace it. There is a certain vulnerability that comes with that where you have to open up to it, accept it, and get into the Zen of it.
You've put your finger on it exactly. Let me just continue that theme. In the moment, you say, wait a moment, this is part of me, you leave yourself so open, so vulnerable, so filled with fear, because you say "wait a minute, this is not going to get better." This is like a missing limb, and I've got to deal with this and accept the fact that I'm not going to be able to run the way I did, but I can do other things. And that's exactly right—you've got to go through a whole process that could be likened to healing in accepting this sound.
But that is just it—most people may not get to the point where they can open themselves up to the possibility that they cannot control the tinnitus. They are so busy defending themselves against the tinnitus that they won't be able to admit that it is beyond their control. They will never conquer it by building a wall around it; this will usually only make matters worse.
As a professional working in the field, you have just understood, and that's why I had such a strong reaction when Dr. Jack Vernon at American Tinnitus Association (ATA) was using his instruments to try and identify the sound I was hearing. When he matched my tinnitus, the tears streamed out of my eyes. Somebody had connected with this awful thing inside me. This was apparently a common occurrence, because he had a box of Kleenex there. It must happen to so many people—Yes, that's the sound." And what you've just said is "Yes, that's the feeling." You've hit it exactly. You must tell your patients that you understand that and the next step is the step beyond what you've just described. Now that you accept that it's like grief; I have to accept that and I've got to go on. The longer you're in the denial phase, the longer you delay the start of the healing phase.
I think audiologists and their patients are going to find your insights beneficial.
Dr. Fabry, I haven't had this kind of conversation before, because everybody who interviews me doesn't really understand it. Somehow, through your empathy with your patients, you've grasped it completely. If you can convey what you've just spoken of and what I just spoke of to the other audiologists and in turn their patients, we will have done a really good thing. I'm busy and I don't want to do interviews, and I'm tired of interviews but when your name and the audiology thing came up, some instinct made me say "yes" to this particular interview. And now I understand why.
Thank you for that. You have reminded me that despite the technical advances in my profession, it still is about a connection that exists between patient and provider in order to achieve outcomes. It was the human element—not the machines that helped you come to terms with your tinnitus.
Unfortunately, I have seen doctors who looked in my ears and said that there is nothing more that can be done.
So many of us are attracted to the technical side of things—the digital hearing aids, cochlear implants, electrophysiology, and other equipment that we forget about the emotional side of hearing loss and tinnitus.
It is more than the loss of hearing. I interviewed Rush Limbaugh recently…
On your television program "Raw Nerve"?
Did you see the interview?
Yes, I did. He suffered a sudden-onset hearing loss and received a cochlear implant.
After the interview, I invited him to my house for Monday Night Football, and he came. For a man who makes his living on radio, who couldn't hear the sound of his voice for about three months until he had that implant. I didn't realize that when you're deaf you can't hear your own voice. Surely the sound transmits some through the bone, but no. He said he didn't panic.
I think that I would have panicked.
Me too—like, "I can't stand to live this way." People that have a loss of hearing have some hope through experts, like yourself, of regaining at least partial if not all of their hearing.
Yes, although a lot of progress has been made with hearing aids and cochlear implants, tinnitus remains a pretty wide open area. There are estimates of up to 50 million people in the United States with tinnitus, and there isn't a proven cure that works for everyone. Tinnitus is reportedly the most frequently cited complaint of Iraq War veterans, due to the noise exposure levels of gunfire and IEDs that they are subjected to during conflict. Much work remains to be done.
It was a pleasure to have talked to you. Good luck, and take care of yourself.
Dave Fabry, PhD, is the content editor for Audiology Today. He is also the managing director of AudioSync Hearing Technologies.