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 suddenly have a great amount of sympathy for that poor dog that continues to chase his own tail in circles.
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.
Melissa
© 2012 Hearing Elmo
Hearing Elmo 
Melissa, I had no idea of your problems. Your aunt hasn’t said anything. You, by the way, are an amazing writer! My heart goes out to you and my prayers are with you that you will find your way – with God’s help.
Melissa – Thank you for sharing your story. I know what it is like to have hearing loss and be a mom from personal experience. Would you please check out my personal blog sometime? It would be great to have your input as a fellow mom with hearing loss – http://LipreadingMom.com. Blessings!
Melissa, I am so grateful that you and Denise have connected so that we all can be the beneficiaries of your story. I will suggest, to begin, that part of your new normal is that you are “much of a writer”. Denise says it often, and it’s true: write from the heart and you cannot go wrong. Although our stories are not true parallels (I have a genetically based progressive loss that led to cochlear implants) much of what you wrote resonated with me. That sense of isolating oneself…the being annoyed with oneself (and believe it I still annoy myself regularly, even as a “hearing again” person LOL)…the looks, the assumptions that people around us make and our struggle to decide if we should explain ourselves, ask for what we need, or just say “screw it” and go home. And STAY home. What touched me most of all was your description of trying to imprint sound-memories on your brain. So you can recall them in case you can’t hear them later. I did that, too. It’s both heartbreaking and life affirming, in my opinion. I hope we hear from you again.
Melissa writes beautifully and says it like it is. She is not alone in the feelings that she experiences with hearing loss and Meniere’s disease. I, too, used to think the God doesn’t give us more than we can handle but a few years ago I changed my thinking on that. I feel that when we do have more than we can handle, God wants us to depend on Him. Denise, thank you for encouraging others to step out of their comfort zone to write on your blog. You are such an inspiration to others, more than you realize. ❤
Melissa,
I understand. I have a wonderful, supportive husband…thank goodness, but that’s about it.
I can’t work.
I can’t talk on the phone, at all.
I have 0% word recognition in my left ear, and at last reading 19% in my right.
I just had a cochlear implant installed last Thursday, I’ll have it activated on the 31st. I hope this will open up more of a world for me, but I’m not sure it will.
As you say…there must be a limit on saying you can’t come to something because the world is moving, I can’t stand up, and I’m throwing up.
I asked and asked to see friends in small groups. A couple for dinner…ect. But no, they all want to have parties. I can’t do that. I can’t hear, I’m left out, and the stress makes me sick. I also found at the last party that I simply didn’t fit in any more. Everyone now has families, and work, and are active. I’m simply trying to survive day to day. I would walk up to a could of people and they would say hi, then they wouldn’t talk to me.
I’m still a person! I can still listen to what’s going on in your life! I’ve always been the listener, now people shy away from me. We had a group of about 20 people we hung out with, I’ve seen 3 of them in the past year. 2 of them only once. And the other one likes to treat me like nothing is wrong, which is kind of nice, but I can’t hear him, and he doesn’t try to help me. I’m pretty good at speech reading, but the person has to look at me.
I was having test run recently, and they told me to leave my hearing aid with my husband. The attendant took me back to the waiting room and left me. My husband wasn’t there. I didn’t know how to communicate. I was lost. I finally asked someone about him, and explained that I am deaf. They shook their head, they didn’t know. Someone pointed to another part of the offices. No one offered to take me and help me. There were attendants in the room. I found my husband in the other waiting room, he said they made him move. Just thinking of this makes my chest feel tight.
I can’t drive, because I have vertigo with no warning signals. I have to depend on my husband to take me anywhere. I wish I had friends to help….or just spend time with.
But I admit, sometimes I do shy away from seeing people. The friend who wants to treat me like I’m fine….I make up excuses not to see him. I care for him, but I normally end up going up stairs and letting my husband and him visit while I cry.
I hate it when someone says something, and I ask what they said, and they say, it wasn’t important. Then why did you say it? And even if it’s not, I feel left out!
I could go on, but I won’t.
I’m lucky my husband tries so hard to make all of my good days special.
I realize that this isn’t the life I planned, so I need to change my plan!
and one really good thing about being deaf without my hearing aid….I can sleep through anything! I never have to hear a whining child in a store…… Yes, I can tune people out. That’s probably going to be harder when my CI starts to work. (I’ve only been deaf for a year, so we are really hoping I will have good progress in a short amount of time.)
Always remember, you aren’t really alone. I have a lot of friends on line….I know it’s different. But most are chronically ill, so even if they lived close we probably couldn’t see each other much. But we would understand, and stay in contact.
I hope I can become less isolated in the future. I will have to find a way. For now, my on line support group means the world to me.
(sorry so long.)
wendy
I understand exactly how you feel. Really, to a T. I don’t have the same illness, but I have the same “I hate everything, even though I know I’m lucky” syndrome.
Writing about it is a great way not only to release some of those feelings, but help heal them in others, too. I know I feel healed at least a little when I know I’m not the only one. 🙂
I don’t know what your doctors tell you, and I don’t know your medical history. However, I do know that they do amazing things for patients with your symptons at the Shea Ear Clinic in Memphis, TN. I trained there and continue to see patients there regularly although not working full time on staff. Patients come from all over the world to be treated there–and I can tell you it is last resort to travel from western Australia or Baharain for treatment to Memphis, TN. If you’re in Alabama, it is certainly worth looking in to. Dr. John Emmett is one of the most compassionate and qualified otologists in the world. Check it out at http://www.sheaclinic.com. He may be able to give you the benefit of a “normal” life. And, if you truly can’t afford a hearing aid for the other ear, I work with the Starkey Hearing Foundation “SoTheWorldMayHear.org” There is HOPE.
So many of these issues sound so familiar to so many of us. If there were just the perfect word to make all okay. Yes we have to pick up ourselves by the bootstraps and move forward or we will be left behind. Not wanting to be involved in the movie, restuarant situations very understandable. I think we have to make ourselves to it sometimes and on those occasions something usually good in the evening’s event made it worth going. Watch for those good moments.
I am so fortunate to have had the 60 years of good hearing so I still live off that a lot. I work at be involved because there are so many others like ourselves that need that little pick up and some words of wisdom that will help in some way. Like some things here will help you. In all honesty do I love everyday can’t wait for the next moment of experiences no. But you know what you don’t have to be deaf to have those types of feelings. So many things go on in life now that have tragic impacts on anothers life.
We can only try to move on and find a way to make a difference for someone else when that happen one day it will be worth it all. I talk to myself quite often to keep reasurring myself of these things as there are at most times no one to talk to here. But then I will get a Txt Msg, an e-mail a call from my sister anything that helps me remind myself that people do care. They don’t know what to do for me we have to train them and then it is easy for them to forget. It is not easy to talk about the negative impact deafness can have on one. But then I just have to un hook to be reminded that I have been blessed to be able to return to a communicating world. Many times when in heavy conversations with many I cannot honestly tell you much of what was said. I just try to get enough out of it for the conversation to make a little sense to me. It has changed my world and shown me a new world I would never have been expected to be in. The dizzies a whole other story. But you know what I have learned such a respect that I would never have understood had I not gone suddenly deaf. It ‘s a new place in life. But I am finding it can keep me busier and busier just trying to make any difference in touching a life of one wanting to hear again. I thank the Lord for how good he has been to me. Do I like all the lessons I have been chosen to learn (no). But what an honor that God chose me to help step outside the box so that others may learn many of the lessons he has for us to learn.
Thanks for these columns soft spoken subway girl I know what you are talking about.
I have to have my wife tell me what she said uffda.
Your narrative is wonderful Melissa! Like you and many many others, I have experienced the isolation and perpetual grief process that accompanies progressive invisible challenges. If everyone in the world were to become transparent, except for their struggles, we would see that feeling alone while dealing multiple hidden situations is more the norm than the abnormal. It is humbling. There are many people like you, who were having very similar experiences. Thank you for sharing Melissa, so that others will not feel so alone.