I’ve worn hearing aids for over 45 years and I’ve been an Audiologist almost as long. I’ve worked with hard of hearing and deaf people and their families for my entire career and you would think that I would have a good understanding of the feelings and experiences of people who are deaf, particularly late deafened people. Well, I thought I did; certainly I felt that in my work with deaf people over these years I showed the necessary sensitivity to their plight. Well, as events in the past few months have shown me, I did and I didn’t.
Several months ago, I developed an external ear infection, one that prevented me from wearing a hearing aid in either of my ears for three weeks. Suddenly I went from someone with a bilateral 85-95 dB hearing loss which, with appropriate hearing aids, permitted me to function as a hard of hearing person, to someone whose communication skills were drastically affected by my lack of amplification. In other words, I went my being a hard of hearing person to one who was functionally deaf for those three weeks. And as much as I thought I knew – in spite of all the theoretical expectations, all the testimony and commentary I heard over the years – I was still unprepared for the differences my loss of hearing made in my life for those three weeks.
The infection began overseas, while I was attending the 4th International Congress of the Hard of Hearing. We had planned to stay a few days in Vienna after the conference, but when I developed the bilateral external ear condition, we made arrangements to get an earlier flight. We couldn’t go out to dinner with friends, we couldn’t go on any tours, and we worried about getting the necessary treatment in a foreign country. On this latter point, we shouldn’t have worried: as it turns out, effective treatment (at least from my definition) wasn’t available here either. Every Physician I saw had their favorite nostrum, all somewhat different, with lots of trial and error (I think mostly error) and my left ear still hasn’t cleared up. But back to the impact of the hearing loss.
Of course, the first impact of the hearing loss was the fact that I could no longer communicate easily with my wife. She became quite skilled at charades, at devising all kinds of non-verbal gesture to transmit messages, while I found that my speechreading skills improved (from maybe 10% of a limited conversation to about 20%). We also brushed up on our rudimentary fingerspelling skills. One letter at a time and I would guess whether it was a “p” or a “k”, or whatever (with only 26 choices, I eventually got it right!). My wife is wonderfully patient and my difficulties in communicating with her, while frustrating, did not surprise me. I expected that kind of obstacle.
What I had not foreseen was the sensation of isolation, of feeling cut off from the world. Interestingly enough, and as audiologists can attest to, one of the ubiquitous components of “Psychology of Deafness” curriculums in Audiology programs was a concept developed by a psychologist by the name of Ramsdell hypothesizing three theoretical levels of hearing. Ramsdell observed that the major initial complaint of soldiers deafened as a result of war injuries (this goes back to WW II) was not the problems they had in communication (this came, of course, but a bit later), but that “the world seemed dead”. What the soldiers were unconsciously experiencing was the absence of the so-called “background or primitive” level of hearing. Sound, at its most basic, is a consequence of movement and life, of the interaction of one force upon another, and it presence (according to Ramsdell) is a way people psychologically “couple” themselves to the world around them. We are not consciously aware of the presence of this background level of sound, but it’s sudden absence leaves a void in our normal sensory expectations.
As an example, it took me a while that I was reacting to the absence of “background” sounds as I was driving my car. I realized then that I was missing the sound of the road noise – not the signal or warning sounds of a siren (the second level of hearing), but the prosaic and ever present sounds of the car wheels on the road. Somehow this change varied my normal driving mode and expectations enough to where I became much more tense behind the wheel. I also found myself obeying all the traffic laws with extra vigor: I didn’t want to have to get into a discussion with a state trooper, trying to explain why I slightly exceeded the speed limit, etc. After my first two attempts, I didn’t want to go shopping any more (being “retired”, I’m the one who has this responsibility in my family). I was apprehensive lest I meet some acquaintance and be forced into a conversation: I just didn’t want to try to communicate, or go through the song and dance about my (temporary) loss of hearing function. Going through the check out line, the usual question from the young ladies in the A & P is “plastic or paper bags”. So when she looked up at me with a questioning look after she rang up my groceries, I very appropriately, or so I thought, said “paper”. She looked at me like I was crazy and shook her head (but did put my groceries in a paper bag). I still don’t know what she asked me.
For the first week or so, I was acutely aware of what I was not hearing. And since I practically cloistered myself in my home, it wasn’t other people – they were not around. I couldn’t hear my footsteps as I walked on my gravel driveway to pick up mail at the mailbox. What made this a particularly poignant experience, is that I remember that when I put my first hearing aid 45 years ago, the first auditory sensations I remember receiving was my footsteps in the corridor at Walter Reed Army Hospital. And there were the keys I dropped on the driveway while getting into my car. Ordinarily I would hear them as they hit the ground. This time I didn’t. I couldn’t find them and had to go back into the house to get the spare set. When I returned to the car, there they were on the ground.
All “little” things. All quite predictable. None which would be a surprise to deaf people and to which I thought I had developed a good empathetic understanding. But as this little things added up week by week, I got an inkling, not just an intellectual inkling, but a gut inkling, of what late deafened people go through day by day. Not being able to send a fax because I couldn’t hear the fax sound; not answering or using the telephones; having my wife call ahead to the dentist and to my doctor explaining my condition and why they had to be sure to take extra care in communicating with me. (My dentist, God bless him, in preparation for a root canal procedure, prepared a bunch of notes to communicate with me on the various stages of the procedure). Even though I once edited a book on the topic, I have become an even more impassioned advocate of the necessity for various kinds of assistive devices, like TTY’s, captioned TV, fax machines that provide a visual signal of a connection, doorknockers and doorbell lights, motion detectors, and so on. I feel more than ever that these are necessities – not luxuries – in the life of a deaf person.
I’m sure that if my condition were a permanent one, I would adapt. I would have to. I would structure my life around the inability to hear, to being a late deafened person, and get on with it. But my life wouldn’t be the same, it couldn’t. Achieving some sort of equilibrium would necessitate a lot more restructuring than I would have thought necessary before this experience, and entail much more feeling of loss and isolation. I’m thankful that I don’t have to make this adjustment. Even though I can only use one hearing aid now, and even though my hearing loss borders on the profound in the ear that I do use my aid, I can unhesitatingly attest to the vast difference between being functionally hard of hearing and being functionally deaf. For my entire career as an Audiologist, I have stressed the crucial necessity of exploiting the full residual hearing of all people with hearing losses. My experiences in the past few months has added additional force to this recommendation. While there are adaptations that can be made, and have successfully been made by many late deafened people, in my opinion there’s no real substitute for hearing – for the sounds of the world.
Times are different now. Years ago, when as a clinician I saw somebody who developed total deafness later on in life, we couldn’t do much but “counsel”. Which meant suggesting that he/she learn to lip-read or learn sign language (which required the concurrent participation of close relatives and friends – not usually realistic). We didn’t have TTY’s, captioned TV, or visual alerting systems. We have them now, plus the cochlea implant. One lesson that I personally take from my “Near Deaf” experience is not just that I don’t like it and that it is much more devastating than I would have predicted, but now that there is another choice that can be made – a cochlea implant – I would not delay in selecting this option. Not only would I make this decision personally, but I would counsel any late deafened person to seriously consider the same option. I have the greatest admiration for congenitally deaf people who lead fruitful and fulfilling lives in the absence of hearing, but for those who have experienced and valued the sense of hearing, its loss can be devastating.
Acknowledgments: An earlier version this article appeared in Life After Deafness, December 1996. This article was supported, in part, by Grant #RH133E30015 from the U.S. Department of Education, NIDRR, to the Lexington Center, Jackson Heights, NY.