All roads lead to ALDA

By Dr. Kathryn Woodcock, 2001

At ALDAcon II, my first contact with Association of Late-Deafened Adults (ALDA) up-close-and-personal, I met many people and swapped stories and feelings about becoming deaf. It was heartwarming, the many shared feelings under all of the stories. But there wasn’t an infinite number of stories. In fact, I kept hearing diverse ALDAns tell just a few life stories over and over. It was particularly eerie that some of them were telling mine, with just a few geographical revisions!

I’ve done some superficial looking to see if there were any accepted classifications and descriptions of hearing loss etiologies, but most of the medical books about hearing loss are full of bloody pictures of internal parts (presumably ears) and words telling doctors how to fix it. Audiology books seemed to focus on testing and aural rehabilitation (staying in the hearing world come hell or high water), on the trickery involved in getting a reluctant patient to use a hearing aid, and on generally milder hearing losses than we have. These didn’t provide what I needed for descriptive purposes, so I decided to make up categories based on the stories ALDAns have told me. I am no anthropologist, but I ended with four broad stories: medicalsurgicaltraumatic, and progressive hearing losses.

Medical

Medical hearing losses are those resulting from chronic and acute illnesses such as Menière’s syndrome, reactions to ototoxic medications, and The Virus. Now, we don’t know what this virus is, but a friend of mine (a Virus guy himself) likes to say, “whenever doctors don’t know what something is, it’s a virus”. Sometimes medical losses are overnight losses, but some people with medical losses became deaf more gradually, say, over five or ten years. But that is not as slow as the typical progressive-loss case, and the onset can usually be linked to some illness. Many of these people tell the tale of being so very sick that deafness was the least of the problems at the time. Especially in the view of the doctors. They tell of having the deafness given short shrift by the caregivers whose training better equipped them to deal with the illness and not with the deaf patient. Their first deaf experience might have been something like a nurse towering over them saying, “What are you complaining about not understanding me for? You’re lucky to be alive.” (Of course, with no hearing and no lipreading experience, the chances of understanding any more than the hostile facial expression are slim.)

Medical losses may not be profound, and the medically deafened person may have had conflicts with professionals and others who believe that they should be able to function as well as a born-hard-of-hearing person with the same audiogram. But lack of lipreading and coping experience may make the residual hearing functionally useless. The perceived marked contrast with one’s former hearing makes it easy, though not pleasant, to realize the need to acquire deaf tools: caption decoder, TTY, etc.

Besides hearing loss, some conditions like Menière’s have additional symptoms, such as dizziness, which further interfere with normal activities of living: walking, working, driving.

Surgical

Surgical losses are those requiring removal of tumors on the auditory nerves: neurofibromatosis type-2 (NF-2) and bilateral acoustic neuromas. Usually, these people know going into the hospital that they will be deaf when they come out. Forewarned does not necessarily mean forearmed, though, either in the case of the patient or the hospital. Although you’d think that they would get some mental health preparation and ample technical support with the luxury of advance warning, it seems that the general approach is not much better than for those struck by The Virus. On the same basis that born-deaf patients may have sign language interpreters in the hospital, don’t you think that a clinic that does this sort of surgery should have a print interpreter (real-time captioning) standing by post-operatively to assist the patient to communicate?

Severing the auditory nerve creates an absolute silent world, which may not be as annoying as dealing with people who persist in providing information on this miraculous Bionic Ear (cochlear implant) that they just read about in the paper. Bionic ears have nothing to offer a severed auditory nerve.

In addition to deafness, NF-2 requires coping with numerous operations.

Traumatic

Traumatic losses are incurred in a wide variety of exciting and adventurous ways, from motorcycle riding to settling an argument in the alley behind a bar. Again, the “you’re-lucky-to-be-alive” argument is used to deflect criticisms that the medical environment should have more assistance to offer. Rather than assist the patient to function without hearing, acceptance of deafness may be discouraged because deafness is temporary in some trauma cases. False hopes, nurtured by the medical experts, don’t evaporate painlessly. Wouldn’t you think that it would be easier to get used to having your hearing back? The long-term therapy and treatment for any other concurrent injuries can be more difficult with new deafness.

Like many accidents, deafness from traumatic causes can be overlaid with a lot of “if only’s”: “if only I hadn’t been there”, “if only I had taken a cab”, etc. The anniversary of the event can revive the sense of loss.

Progressive

Progressive losses sometimes result from aging—though simple presbycusis is usually a milder loss—and from overexposure to excessive noise. Although noise cases seem mostly to be mild or moderate, even a small proportion of these equates to plenty of cases of occupational noise resulting in deafness. As well, I know two deafened adults whose milder medical hearing loss was pushed over the brink into deafness by occupational noise exposure. There is a form of hereditary hearing loss that is progressive. Then there is the idiopathic progressive loss. The medical term “idiopathic” does not mean that the doctor is a pathetic idiot, though you may be forgiven for thinking so as you’re pushed out the door to make room for a case he can understand and/or actually do something about. Idiopathic refers to “no known cause”. Maybe the idiopathic cases are genetic, but all of the cases in previous generations had died of other causes before becoming deaf. Or your mother brought home the wrong baby from the hospital (I wonder about mine).

Generalizing a bit about the rate of its progression, it seems that by the teen years the loss is mild or moderate, becoming severe to profound through the twenties and thirties, though some environmental noise perception can linger awhile. In contrast to the other ways of becoming deaf, the person with a progressive loss may not strongly identify with “hearing” people (inexplicably always feeling outside the hearing world), and may develop satisfactory deaf functional skills (i.e. elaborate ways of faking comprehension), but has no discernable prompt to change their self-image from hearing to deaf.

I didn’t make up this classification to factionalize ALDAns. Indeed, I think we can all feel linked even though we may have taken different roads to get here. But in my own deafened support group, everyone else was an overnighter, coping with new ways of functioning, mourning absent music. They were sure they were deaf, and didn’t know how to cope; I knew how to function but wasn’t sure I was deaf. In common, we had feelings and frustrations about situations in the hearing world and our homes, but it wasn’t until I met people with similar progressive losses at ALDAcon that I really felt “normal”: not only our present feelings but also our memories were identical. If you haven’t found exactly the help you’re looking for from ALDA, maybe you haven’t yet met someone who traveled the same road to get here.

On a lighter note, maybe etiologies would be like horoscope signs if ALDA ran a singles bar. “Medical—right? I knew it!” “I’m a surgical guy myself, on the cusp of NF-2.” “Bilateral progressive seeks same.” “Traumatic—fractured skull with off-road vehicle ascending.” Whatever works for you!

This article previously appeared with my permission in The 1991 ALDA Reader.