Hearing Elmo welcomes, Melissa Sisco, guest author from Alabama. One of the many things I love about Melissa’s writing is that she is very transparent and doesn’t “sugarcoat” things. The way I see it, a blog supported by writers who live with invisible illness or disability, must be very REAL as they write. Melissa is the mother of two young daughters and was first diagnosed with Meniere’s Disease in 2007. Melissa also has asthma/allergies, a heart condition, weak bones, endometriosis, and diabetes Type II. Melissa admitted that “Meniere’s Disease has been the single most challenging medical diagnosis I have experienced in my 32 years”. A big shout out to Melissa for writing!
Okay. So I’ve had Meniere’s Disease for over 7 years now. I’ve been bilateral for over 2 years. The reality is that my left ear is more or less a lovely decorative piece. I have a usable older (once top of the line) hearing aid that is being refashioned for use on my right ear. I could truly benefit the most from a nice bi-aural set, but insurance doesn’t cover that, and the set I would need would set me back a good 8 to 10 thousand dollars. I now make too much money to qualify for any government assistance, so that option is gone now. I don’t have that kind of money lying around, nor do I want to bury myself in credit card debt, so I would rather spend it on my daughters while enjoying some activities of natural hearing while I still have some left.
When I was first diagnosed at 27, the hearing loss thing felt like a death sentence. Now I see it’s just part of my new me. My world is more quiet, save for the tinnitus. I see more, I feel more, I taste more and yes, I even smell more. I’ve enriched my other senses out of necessity. And really that is not so bad. I’ve even accepted the definition of disability as it is necessary to protect me legally and medically. But I am no less ABLE. I just don’t hear as well. My mind is still sharp as a tack (most of the time). Hearing –not so much. I am okay with that. I can accept it; make peace with it. That is God’s Will after all. Everything happens for a purpose.
But, there is one pet peeve I’ve encountered repeatedly lately that really gets under my skin. You know, like poison ivy or something akin to that. Starts as a tiny pink slightly itchy dot. You tell yourself not to pay it any attention. But it itches. You scratch, it spreads, it gets worse. Finally you have to stop and confront it with calamine, Benadryl or even a visit to the doctor if it’s bad enough or you happen to be allergic. That pet peeve is people who have already written me off as Disabled. I need a, beg my pardon, flipping epi-pen for this one.
Nothing else infuriates me more right now than that attitude from others, whether they are strangers, co-workers (present or past), friends (present or past), or family (can’t change that). Being completely written off as “Oh, she’s done, stick a fork in her;” is absolutely the best way to watch steam come blowing out of my deaf and going-deaf ears. The word anger just doesn’t seem to really define how I truly feel when I am overlooked, uninvited, unfriended, or just plain ignored because, well I am (*gasp*) Disabled now. There are days you would think Disabled is synonymous with Dead. Well I am NOT.
I still eat food. In public. I still can be a bridesmaid (although I can’t wear heels – I will look tipsy way before anyone else). I still have a promising career because of this lovely new-fangled invention, they call it a chair. I still drive a car! For now anyway. I still type 85 wpm. I am still a mother to my daughters, a wife to my husband, a daughter, a friend, etc. to those who haven’t walked away. And a loyal one at that. I have had to make certain adjustments, like asking people to look me in the face when they are talking, or to wait until I can get my caption call phone working before we continue a good conversation, but these aren’t overboard requests. I’m not asking people to walk through lava or sit in on my inner ear perfusions with me. I reserve the special stuff only for my closest loved ones.
I was really, deeply hurt when I overheard (okay, read the transcript) of a conversation I wasn’t supposed to hear. (Lovely captioning apps that Apple offers.) I found out that several people I had worked with previously (and some I still have to work with –awkward) had nixed our friendship because they assumed my “Disability” meant my career was going nowhere. No career meant I was “no good” to them. Words really can’t accurately express how deeply hurt I was. I have always taken pride in doing what I can for those I work with. I repeat in my head that I can’t possibly know the trials that others may be going through personally and so I make it my mission to do what I can to make things easier where I can. Accidentally finding that transcript was one swift kick in the emotional gut. I still treat them as I did before, because I can’t change who I am. I will always help when I feel the need is there. But that pain and anger is just below the surface as well. I guess it’s more like a deep throbbing disappointment now. And it hurts to see people daily who think I’m “done for” lying to me; eyes, words, gestures and all.
I struggled long enough to convince myself I was still good enough for myself, even without hearing or good balance. It took me a while, but I got there. There are still some rough days, the ones I can’t get out of bed because of the vertigo, or a random vertigo drop attack that suddenly smacks me with a sidewalk; but I am making it. I just didn’t quite imagine my work place I once considered safe turning into a world of landmines. People waiting for me to drop work permanently because they want my job, or they want someone else in my job. (After all Disabled people don’t deserve real jobs. *sarcastic thoughts of “healthy” people*)
Losing friendships hasn’t gotten any easier either. Some people just get tired of trying I guess. And I don’t blame them. I had a rather extended pity party for myself for a while. Making new friendships is even harder. I am not obviously deaf/hard of hearing. I “cover” for it well. Most people have no idea I can’t hear them, that I am only lipreading and body gesture reading. I’ve yet to try to figure out the best time to break that to people. If you tell them right from the get go they avoid you like the plague. If you wait a while, you get the “I had no idea,” or “Oh, that’s why you said [whatever didn’t make sense the other day].” Neither response is more conducive to friendship than the other. My favorite response was, “Why don’t you just hang out with only Deaf people?” No comment. I walked away from that one, quickly.
I am still working on my ASL. It is slow and painful for me. I crave grammar, structure, (I used to love diagramming sentences) and ASL has little to none of that. I also have no one to practice with except my daughters (at 5 and 7 they are already better than me!). My husband is starting to try, if only because it annoys him that “his girls” can talk about anything right in front of him and he is completely clueless.
I have recently picked up an old hobby again. My acoustic guitar. Can’t hear all the notes. But I can feel the vibrations. I actually play better now than I did when I could hear fully. How ironic is that?
If you would like to contact Melissa, reply here or contact me. I will forward your email to her! email@example.com