Fresh to DEAF

Shot by @AudieAli (IG)

I grew up being clumsier than other kids. I was forever stumbling and falling on thin air. Up the stairs as opposed to down the stairs. I always had headaches—the worst kind— as a kid. The doctors could never find the source. I had all sorts of scans done and nothing was ever found to be wrong. I also suffered from chronic ear infections that never seemed to make any sense.

In my adult life, I have dealt with chronic vertigo (dizzy spells) that would just occur for seemingly no reason. Sometimes my ears ring or it sounds like a have a seashell permanently attached to my head. I have a hard time hearing certain frequencies and especially loud volumes hurt my ears. Sometimes my right ear feels full or clogged. After several visits to the Ear, Nose, and Throat doctor (ENT), I was finally diagnosed me with Meniere’s Disease in 2017. The only reason I even knew what this disease was is because I watched a TV show on ABC family (now FreeForm) called Switched at Birth. It’s one of those trashy, poorly written shows with bad acting that we all somehow can’t seem to stop watching. It happened to be about a deaf girl who discovers she was switched at birth who apparently had Meniere’s Disease in real life.

I was happy to know that I (a) wasn’t crazy, and (b) had a name for all the issues I’ve ever had with my ears. It has been an interesting journey. It was both a relief and a disappointment to finally put a name to the thing that had been disrupting my life for so long. But it hasn’t gotten any easier. Especially with knowing the knowledge that there is a very high chance of me losing complete hearing in my right ear and also the chance that the disease could begin to affect both of my ears. Which could mean that I could very well be deaf in both of my ears at some point in my life. At some point (fairly soon) I’d like to learn Sign Language but I haven’t found the time as of yet.

To my dismay, most people are not understanding of the fact that I am hard of hearing. I get a lot of sighs and tongue clicks from people who think I should have magical hearing powers when they are the ones who are standing 2-3 feet away from me and basically speaking at a whisper. And when I ask them to repeat themselves 3-4 times they get upset. Then the situation always goes on with my explaining that I am hard of hearing. Some people are understanding and adjust, but others act as if it is an inconvenience to them and what they need from me at that point in time. Which, isn’t really fair considering I have no control over my hearing, or how well I do or don’t hear on any particular day. My hearing fluctuates. On a good day, I can hear most things without issue. But on a bad day, I probably have a migraine which also means my ear probably hurts and sounds like a seashell is strapped to my head. In other words, I can’t hear a damn thing. And it’s not my fault.

It is frustrating for me enough to have to ask people to repeat themselves more than once. I hate repeating myself, so I know other people must hate it too. But when I make more effort to make someone else comfortable regarding my disability (because that is what it is) than they do to understand and find patience, I just don’t understand.

Moral of the story: hearing loss is more common than you think. And if someone asks you to repeat yourself more than once, speak up.