There was a documentary on Lauren Bacall, actor, on television that morning, the movie star of Hollywood’s golden age. I had a virus, or so I thought, and I was taking antibiotics and feeling off-balance. It was nice to have the flat to myself and watch some tv biographies while my flatmates were at work. Suddenly, I realised I must be sitting on the remote control, as Bacall’s smooth voice trailed off into quietness. But how peculiar! The remote was beside me, and I wasn’t sitting on the volume button after all. Darts of fear shot through my stomach as I realised that the television was fine, it was the hearing in my right ear that wasn’t. In those 10 seconds, it disappeared totally, never to return.
Two hours later I found I was unable to walk in a straight line or make it down the stairs, and I really started to panic in earnest. I thought I might have had a stroke. A hospital admission, an MRI and two lumbar punctures later, and I was told I had MS; that was 19 years ago.
1 in 1,000 of us in Ireland will be diagnosed with MS, but it is “exceedingly rare” to have permanent deafness from MS. Yep, I feel so goddamn special. Deafness often goes together with tinnitus, a roaring, grating, rushing noise constantly roaring in my deaf ear, but I don’t notice it any more. It’s amazing what we can adapt to and accept as normal. Another MS-friend has tinnitus too, but no deafness, so having tinnitus doesn’t necessarily mean you’re going to lose your hearing. A friend-of-a-friend with MS lost her hearing in one ear for six months, and then one day her full hearing returned. In fact, it’s far more likely that even if you lose your hearing that it will return, when you’ve MS. My case is not a common one. I believed for a long time that that my hearing would return too, but I eventually accepted that it was gone for good, or until they find “the cure”.
To use a hearing-aid you must have some residual hearing. I have nothing, unless it’s over 80 decibels (like a loud motorbike) so a hearing aid would be useless to me. The neurologist and audiologist tried to locate the lesion that was causing the deafness, but they couldn’t pinpoint it. Because the sudden deafness happened during a severe MS-relapse, it’s nearly certain that MS caused it. I had severe balance problems during that relapse too, so it’s likely that a lesion in the brainstem caused both issues.
I have become very protective of my remaining hearing. Previously I loved live gigs and concerts, loud music on my headphones, but now even a trip to the cinema has me bringing a soft earplug (you only need one when you’re unilaterally deaf!) to protect my good ear.
It must be admitted that there are some small benefits. One deaf ear is very handy for cutting out chatter in the open plan, being able to make a call in a noisy setting, or rolling over onto your good side to get a peaceful sleep. I can also understand people in noisy places better than most, as I rely on lip-reading a lot in these kinds of places. One-to-one, I don’t encounter any issues with hearing people; it’s background noise that can make it challenging.
With only one ear hearing, you can’t locate the direction of sounds; it all sounds like it’s coming from the left! I’d a funny episode with a very crotchety oul’ wan in Arnotts a few years ago, while waiting for the lingerie changing-rooms. I eventually realised this half-clothed older lady in one of the cubicles was frantically hailing me to ask me to call the shop assistant back. She must have tried a few times to get my attention before I’d responded because she grumpily spat out “are you deaf, or what?”. I smiled and said pleasantly, “I am actually; deaf as a post in my right ear”. The look of mortification on her face was very amusing!
All joking aside, deafness is a serious issue to deal with, as is any loss in a functional system. In the past I used to dread the frequent relapses that rolled in every few months; you never knew what you’d lose each time. With the newer MS medications that are now available, I don’t worry about relapses any more. My MS has reached a level of stability I never thought possible. Maybe, in time, and with new discoveries yet to be made, we can even start fixing things that got broken along the way.