what comes after what was

18 years ago today I woke up and was deaf, completely and totally 100% deaf. Not a day goes by where I am not reminded of my loss, but somewhere along the way it became something I’m grateful for.

While it is called “sudden sensorineural hearing loss”, there really wasn’t that much sudden about it. In the back of my mind I’d known it was coming for a couple of years and I’d had plenty of warning before this one happened. But this was it, total absolute silence. I couldn’t hear anything in either ear.

Back in 1999, I’d had these “attacks” of intense vertigo, where I would lose hearing in one or both ears. They lasted from 5 minutes to an hour. It was completely unpredictable when it happened. First thing I did was call my doctor – I’m a singer, I’m not going to mess with anything involving losing my hearing. That would be devastating, right? We tried a couple of things, working under the thought that it was probably something called Ménière’s disease (spoiler: it wasn’t).

One of the drugs my doctor gave me was valium, an anti-anxiety medicine that I’d always put in the category of “drugs people take for fun”, which I am not a fan of. I very quickly changed my attitude on anti-anxiety medications, because I found that it really did stop my brain from racing and freaking out – there was all of this “how am I going to survive without hearing?” along with the “what if I have brain cancer? what is causing this? am I going die?” stuff that goes along with a non-diagnosis. The stress and anxiety of having the attack was just making the attacks worse, and the valium allowed me to face it and think rationally when it happened. I’m still a big believer in anti-anxiety medication, especially after a work-related panic attack sent me to the ER with chest pains and feeling like I couldn’t breathe. While I’ll always advocate for therapy and stress-reduction techniques, in the moment of anxiety, there is nothing wrong with chemical help. Panic attacks are a very real physical thing, they just start in your brain. They need to be treated just like any other illness

Off my soapbox and on with the story, I was put on a combination of steroids and antivirals, visited one of the top ENTs in the world, and finally got my diagnosis of autoimmune inner ear disease. But it was too late for my right ear, it was deaf and there was no coming back. What did happen though, was it stopped the attacks, and it stopped any hearing loss in my left ear. At least for 2 years.

So when it did happen the final time, the attacks had been coming. I’d started proactively seeking treatment again. But it was inevitable, I had an attack in the middle of the night where it was just done. I was deaf in both ears from that moment on.

I went three months in complete and total silence and started to learn a bit how to cope. I’ll be honest, it DID get easier as time went on, but it was awful. I was fortunate that we were able to recover about 40% of my hearing in my left ear – enough for a hearing aid to help some. Looking back though, after 18 years, I’m grateful I went through those three months. That might sound insane, but what I learned during that time is that I’m a survivor. I can figure out a way to cope with just about anything life throws at me.

During the last 18 years, I’ve had lots of ups and downs. I’ve both gained, and then lost, some hearing. I’ve had 6 different hearing aids. I’ve starred in musicals, I’ve been rejected after auditions. I helped raise two amazing boys who are now raising kids of their own. I had to have an emergency colon resection surgery, a resulting hernia repair, a knee repair, and central venous line placed to my heart. I quit jobs or got laid off. I ended a long-term relationship and moved across the country. I earned a Master’s Degree. I got married and am getting divorced. I led a thriving nonprofit to financial stability. I presented at and actively participated in conferences. I bought two homes. I made some incredible friends, and lost some as well. And I got a cochlear implant and started a completely new hearing journey.

So what happens now? Life. Life happens. And I know that as hard as whatever it might throw at me is, I’ll survive it, and probably end up a better person for it.

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