Another Sister Going Deaf

By Tina Blue
March 16, 2002

    The deaf fairy has struck again in my family.  My youngest sister, Carol, who until last July had excellent hearing, lost much of her hearing in one ear and some in her other ear just over the course of a few months.
    Deafness seems to run in the female line of my family.  My mother was deaf.  So were her mother and several of her mother's sisters.  (One of Grandma's brothers was deaf, too, but usually the deaf fairy visits only the women in our family.)

    One of my younger sisters has been severely hearing-impaired since childhood.  Linda is even deafer than I am, and that's pretty darned deaf.

    My hearing loss is caused by Menière's disease.  I don't know how many of my deaf relatives also had Menière's, but there does seem to be a genetic component to the condition.  I also don't know if my sister Linda's deafness is caused by Menière's, because she's never been officially diagnosed, but I suspect that it is.

    When Carol's hearing suddenly deteriorated drastically over just a three-month period last year, she saw an ENT (Ear, Nose, and Throat ) specialist and was diagnosed with Menière's. 

          Carol's difficulty started with a very disturbing form of tinnitus that sounded like she was listening to her own pulse pounding very loudly.  Since then her hearing loss has progressed rapidly.  One thing about Menière's, as I know from my own experience, is that its progression varies.  Sometimes my hearing will stabilize for months or even years, but then at other times it will get much, much worse over the course of just one or two months.  That's what seems to have happened to Carol.  Until July, excellent hearing; from July to October, sudden significant hearing loss.  That's rough to deal with when you are totally unprepared for it.

          Her hearing may stabilize at this level for some time, or it may suddenly start getting worse again quite rapidly.  If it stabilizes, she may get by without hearing aids for a while, but eventually, and probably sooner rather than later, she will have to get hearing aids.  She teaches eighth-grade English, and eventually she will need hearing aids just to function in the classroom. 

          I teach college English.  (Apparently teaching English runs in the female line of the family, too.)  I do function well in the classroom (with hearing aids), but I was able to make my adjustments incrementally over a period of many years.  Carol had no prior expectation of hearing loss, and no time to get used to it.  As difficult as my adjustments have been, I'm afraid hers are going to be far more difficult.  So far she is handling her sudden hearing loss well, both psychologically and practically, but I do worry about what will happen if she has another sudden burst of drastic hearing loss.

          Neither Linda nor Carol has yet had the vicious vertigo attacks that are the most florid and distressing symptom of Menière's.  Imagine yourself on the fastest-spinning merry-go-round in the world.  Now, multiply that by about a thousand, combine it with severe motion sickness, and imagine not being able to stop or slow the spinning sensation for hours at a time, so that you cannot sit up, cannot walk, and really can't do anything but lie face down gripping the bed or the floor, while still feeling that you will fall off at any moment.  During an attack, I am totally incapacitated. I cannot even raise my head from the ground (or, if I was lucky enough to be struck while on or near a bed, from the bed).

    I suffered my first attack when I was just 39 years old.  Linda is 48; Carol is 47.  Eventually their inner ears will probably be sufficiently damaged to cause dizziness attacks, too.  Some Menière's sufferers have fewer and less frequent attacks than others, so naturally I'm hoping they will be spared the worst effects of the condition.  My own attacks, though quite severe, occur only about four or five times a year.  I have read of people who have the attacks much more often than that (sometimes every day!), so I actually feel a bit lucky myself.

          The first time I had a vertigo attack, I honestly thought I was dying.  That first attack only lasted about three hours, but ever since then they have ranged between 12 and 20 hours.  The first time, I was convinced that I had a brain tumor or that I had suffered a stroke, so considering the alternatives, I was actually relieved to get a diagnosis of Menière's. 

          I've discovered since then that many people mistake their first attack for a brain tumor or a stroke, and that most are as relieved as I was to get a less drastic diagnosis.

          Don't get me wrong.  Menière's is drastic enough.  Though my attacks only come a few times a year, while I am living through one, I can't believe how awful it is.  Even worse, I am usually weak and helpless for nearly a full day following an attack.  But at least the attacks don't kill me, even if I almost wish I could die when I am in the middle of one, with no idea when it will finally let go of me.

          When  my sisters start getting Menière's attacks, they will have the small comfort of knowing that they aren't dying.  Of course, I can't help hoping that somehow they will miraculously avoid getting the attacks at all.  But then again, I had vainly imagined that Carol had actually escaped the family tendency toward deafness. 

    We do still have one sister who isn't deaf or going deaf (at least not yet).  Ironically, the one sister who still has normal hearing is Mame--our oldest sibling.  We also have two brothers, but in our family the deaf fairy is not an equal-opportunity deafness-dispenser.  She has never visited either of them.

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