Hearing Elmo welcomes Melissa Sisco, from Alabama to our list of talented writers who have learned to “write from the heart”. Melissa is the mother of two young daughters. She was first diagnosed with Meniere’s Disease in 2007, and 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”.
I’m not really sure why I’m attempting to do this. I’m not much of a writer; at least I haven’t been for a very long time. But writing is one thing that, luckily, I can still do. I really connected to the last piece that Denise wrote because I am right there, right now. Alone and isolated. I don’t go out much at all, especially by myself.
In brief summary, my name is Melissa, I am a late-deafened adult, 32 year old female, married for 9 years (to an amazingly understanding husband), mother of 2 beautiful girls, ages 3 and 5. I was first diagnosed with Meniere’s Disease in my left ear when my oldest was 4 months old. I woke up one morning and could not hear anything out of my left ear and I was so dizzy I couldn’t even sit up straight in bed. About two years ago I joined the ranks of the Bilateral, but am lucky to only have moderate hearing loss in my right ear. I wear an obscenely expensive digital hearing aid in my left ear (sometimes) and I need one in my right ear, but just can’t afford it right now. I am not Deaf enough to qualify to be a member of the Deaf community where I live, and I am apparently “wrong” for choosing a hearing aid. But I can’t hear enough to qualify for the Hearing World anymore either. I feel lost in limbo. I simply belong nowhere.
Why It Can be Difficult
I used to enjoy simple things like shopping, (especially shoe shopping) but now I avoid shopping trips as they make me nervous and, frankly the last time I did go out, (to my favorite shoe store) I literally knocked over a little old lady who was standing directly behind me. I didn’t know she was there, couldn’t hear her or sense her at all. I backed up from a store display to get a better view and plowed that precious little woman straight into a mannequin. I was so embarrassed, I apologized profusely as other patrons helped her up and glared at me like I was the devil incarnate. I left the store and haven’t gone back since.
At work I hide in my cubby hole of an office (it’s actually the records closet and my office). Once upon a time, I was a 911 dispatcher, and I was really good at it. I did that for nearly 8 years, before my hearing loss reached the point where I can no longer do that job safely. I was lucky to not have been let go, and I am now relegated to some sort of mish/mash office manager and dispatch supervisor. I know I am unbelievably blessed just to have a job, but I avoid even my coworkers now because most of the time I have no idea what they are saying, so I just nod my head and try to wear my neutral “yes I understand” expression, which is a big fat lie. I have a strong aversion to my work desk phone. It’s set as loudly as possible, yet I still have to ask people to repeat. (My employer is working on getting me a CapTel phone, but our system is slow as molasses). Sometimes, when I see a number from someone I know I have a particularly hard time understanding (ahem –soft spoken females like me), I just let it ring to voicemail. I have found I also do this at home, and on my cell phone. Although to be fair, half the time I really can’t hear them ring, or –at home anyway- I hear it but can’t find where the “ring” is coming from. (Usually I’m hoping it’s a real sound and not just a figment of my broken cochlear nerve as I frantically search room to room looking for my telltale “flashing strobe light” phone.)
Recently a group of female friends (ok coworkers and coworker’s wives – I don’t really have a lot of friends anymore) went out to dinner and a movie and actually invited me to go along. I really wanted to go, I wanted to be with other people and I really wanted to see that movie! But I remembered that previously, I had a difficult time asking for, receiving, and setting up the captioning device at that particular theater and I’m not going to pay $15.00 to see a movie I can’t “hear/read.” Keep in mind if you are new to the whole captioning thing, you can ask for it, but that doesn’t mean the minimum wage paid teenage employee has any idea what you’re talking about. I dreaded the embarrassment of going through the captioning device thing again, especially in front of others. Also the chosen restaurant was a loud, noisy Mexican joint with great food and a fun ambience, but a terrible place for even the highest quality hearing aid to make a difference. So I lied and said I had no one to watch my kids. Can you say Avoidance?
I rarely get invited anywhere nowadays and subsequently lost a number of “friendships” because of having to cancel last minute because of my lovely vertigo spells. Apparently, “Sorry I’m too busy hanging on to the floor for dear life and vomiting to go out tonight,” has a limit on the number of times it can be used as a forgivable excuse.
Trying to Find the Positive
There are good things about losing your hearing, really there are. If it’s really noisy and I’m trying to sleep (like my neighbor and his oh so noisy garage band at 10 pm, or the neighborhood dogs howling for no reason at all) I can sleep on my good ear so I can’t hear anything. If I have a migraine the hearing loss is actually a relief. I can sometimes pretend I didn’t hear something if it’s something I don’t want to talk about. (I think my husband has figured that last one out, drat.) When my daughter(s) start whining/throwing tantrums I can literally turn my deaf ear to it. Although they have also figured that out too. I really try to appreciate the few sounds I can still hear, now more than ever. I try to imprint these sounds upon my memory so that I never forget – the giggling laughter of my little girls, my husband whispering “I love you” in my good ear, the melody of morning songbirds, and the relaxing sound of ocean waves.
I can actually swim in real life, (well I could swim once anyway), but as for living the new life of a Deaf/ Hard of Hearing person I am barely hanging on to my flotation device. Denise always manages to end her musings on a positive note, so I will try my best.
I hate feeling sorry for myself. I hate being depressed. I hate hating everything. I can’t stand people who constantly whine and throw pity parties for themselves. I certainly don’t want to BE one of them. I’ve always been of the mindset that if you fall, you pull yourself up by your bootstraps and keep going.
I know that I am lucky not to be dying from some terminal disease, I am just going deaf and I’m dizzy most of the time. I know, rationally, that I just have to learn to adjust to my “new” normal. I just don’t happen to be particularly impressed with what my new normal is, or what it may be in the future. So I’m angry sometimes. Well, really more like awfully T’d off. And I am actually annoying myself with the unnecessary amount of negative energy that I am producing.
I try to remember that the good Lord doesn’t give us more than we can handle. But God apparently thinks I have the strength of Hercules or something, but I disagree. Grrrr. I get so mad at myself, at what is happening to me, and I’m mad at being mad. I don’t like mad people!
I might be barely hanging on, and I can’t hear the people who may be shouting at me –trying to help me, but I’m not giving up either. I’m pretty good at the doggie paddle, so I will keep on paddling, I just don’t really know where I will end up. I try to keep a sense of humor about all this when I can, although, sometimes others (fully hearing or truly Deaf) kind of miss the point.
I truly believe that where there is humor there is laughter and laughter spreads joy. And one can still laugh even if you can’t hear yourself do so.
One of my favorite quotes is by Gustave Flaubert –
- “One can be the master of what one does, but never of what one feels.”
At this point in my journey, I know my future is up to me and my actions will determine what is next, but I just feel lost at sea- drifting somewhere, and I don’t even have any oars, or a decent GPS system to help me navigate.
Salud and good luck on wherever you are on your personal journey.
© 2012 Hearing Elmo