At
ALDAcon II, my first contact with 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: medical, surgical, traumatic,
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!
