This is her story:
Walking the line between the hearing and deaf world, with my toes white knuckling the hearing side…
I have experienced many challenges in life, as a mother, and as a woman. Each challenge has helped shape the woman, wife, friend and mother I am today. Each one has given me the opportunity to choose to either crawl in a corner and hide forever or have my moment of weakness and then grow and come out stronger. There have been times I wasn’t sure I would be able to overcome some of my challenges. I felt the weight of my circumstances almost unbearable. I’ve been a teen mom, suffered infertility, difficult pregnancies with 3.5 week hospital stays isolated from my family, health issues that resulted in losing a tube and ovary (a big deal to a woman who was trying desperately to get pregnant), miscarriage, fostering a very troubled teen brother in law, helping a husband (who I’ve been with since I was 15) survive alcoholism. I could write about any number of these, but Anna asked me to share my story about the one thing that effects my daily life now, it’s part of who I am and has forced me to make some very real life changes. I’m no longer just a mom, wife, friend … I’m also hearing impaired, “disabled” .. although, I consider myself very ABLE to do a lot of things, there are also a lot of things I cannot do or enjoy anymore and I am faced with the DAILY choice to either suck it up and keep going or crawl into my corner and play the “I can’t” game. I have my bad days, I’m human… but most people who know me know that I get over it quick and do what I know to do best, and that’s to just put my big girl panties back on and embrace this new life I was given. Because, that’s the one thing that snaps me out of those days quickly.. when I look around at these 5 little smiles (most of the time they are smiles) and am reminded that hearing or not, I’m still alive, I’m still a mom, I still have the best friends, husband and family a girl could ask for and THIS is the life that HE has chosen for me to live and so I do my best to embrace it.
I started to really notice a difference in my hearing about 10 years ago. It just progressively and “slowly” (although, hearing loss like mine in someone in their 20’s is not slow, and is pretty significant) kept getting worse. I went to see doctor after doctor about the ringing in my ears that would never go away and having a harder and harder time hearing things. The each would order blood test after blood test and I have had probably 5 mri/cat scans done. Each would basically shrug their shoulders and say they could not tell me why this is happening or if it will continue. The loss was fairly easy to cope with for the most part until February of 2009. I remember those dark 72 hours like they were yesterday. Probably the scariest thing that has ever happened to me and the hardest to learn to “deal” with. Ironically, I had just bought my first dslr camera (which has been such a blessing in disguise… it’s almost like it was divine intervention that I felt a strong need to invest in a camera and it sparking this new found passion of mine) and talked a friend into letting me play and take some maternity pictures of her. We went to the park and while we were walking around, I kept telling her I was having a REALLY hard time hearing her and my ears were ringing very loudly that day. She was having to speak up and stop to face me to talk to me. The next day I woke up and kept getting dizzy spells and even my own voice sounded VERY strange to me.. almost like when children speak into a box fan. That evening I was sitting on one couch doing some research on photography and my husband was sitting on the other couch watching tv. He was trying to tell me something news related that I had no clue about and I remember getting VERY frustrated b/c it was confusing me because I could not understand what he was saying. It was like trying to understand someone speaking a forgein language you barely understand.. like you hear/understand one word out of a sentence and are trying to piece together what they are saying based on body language, hand movements and that ONE word. I flat out told him, “please stop talking to me, I am not understanding a word you say”. Not understanding what was happening to me (and neither did I really), he got upset too and said it was just because I wasn’t paying attention to him (understand, he is very understanding about my hearing loss.. but neither of us knew what was happening, and I thought I was just having a “bad” night for hearing, which I was having more often at that time, just not quite so severe). The next morning I woke up, went pee, walked to the sink to brush my teeth and was thinking how wonky my head felt and gosh my ears are ringing LOUD today.. turned on the sink and had a “what the fuck is going on” moment (sorry.. but let’s be honest.. it was pretty freaking scary) … I could see the water was on, I could feel the water with my hand.. but it was like my world was suddenly on mute and I could not hear anything (besides the terrible ringing in my ears, which I still have today.. it’s like my amputated leg that you can’t see so people forget that I have that problem). Ok, I could “hear”, but it was not normal, at all. Remember Charlie Browns teacher “waa, waaaaa, waaa, waaaa…”, that’s exactly how people talking sounded to me. I could not hear my childrens tiny voices, even when they yelled, I could “hear” them, but the sound was traveling through damaged parts, so I could not understand the words.. like someone speaking a foreign language again. I would cry, and they would cry. My husband was not at home, it was just me and my two youngest (I only had 4 at the time, and the baby was 4 months old). I can’t remember if I tried to call Anna and Kirk or if I texted them… I do remember having the conversation with Anna about not wanting to go to the doctor because they would just shrug their shoulders like all the other times (although, it had never been so sudden and severe until then) and she told me “go to the freaking doctor, this is not normal”. So I did.
I’ll try to sum up what happened over the next 5 months, because that’s how long it took for things to start happening and for me to start to get at least one foot back into the hearing world. There was a lot of crying (between me and my frustrated husband and children in not being able to communicate normally), a lot of frustration, a lot of anger (me being angry at God for blessing me with four beautiful children who I could not hear their sweet laughter or questions or cries for help), a lot of depression.. it was the darkest 5 months of my life to this day. I could not even call a friend or my Mom to talk about it because I couldn’t hear them on the phone. My husband and I would sit on the couches in the same room and “instant message” each other “it’s going to be okay, we’ll get through this”. I was sent to 4 different “specialist” before being moved to the big dogs at UNT who specialize in cochlear implants, because that is where I am headed if this happens again. Nobody can explain why have been losing my hearing. They have done every test they know to do. Their best “guess” is that it is autoimmune because each time I have gone because of the ringing (which is a sign and result of hearing loss) they have given me high dose steroids for a week or two and over a month or so, I will slowly get “some” of my hearing back but damage is done each time that cannot be fixed. Each “episode” of hearing loss (I have 4 documented with hearing tests over the last 7 years, this last one being the most severe) is like taking 10 steps back and 2 steps forward with the steroids.. they don’t fix it, but help it level off before too much damage is done. That is pretty typical for autoimmune hearing loss, so that is their best guess and because of that.. it really is just a guessing game whether or not I will continue to lose my hearing or if it will stay like this for 10, 20, or 30+ years. I am not a doom and gloom person, but my reality is, that it is a very real possibility that in the next 10 years, cochlear implants may be my only option… which means, when I take them off (like hearing aids), my world will be completely silent (besides the hearing.. some CI patients say the implants made the ringing go away and some say it stays the same.. I would hope that it would go away, I think). I try not to think about it too much and just focus on my world today. In case you are wondering… normal hearing is measured by the hearing threshold level in decibel from -10-110.. “normal” hearing is anything that falls in the range of -10-20ish. Below that is having some hearing damage, below 40 they start to talk about hearing aids… 100+ is deaf, below 80 they tell you to consider cochlear implants… as of June 25, 2009, my hearing ranged from 70 to 85. I know I have lost some since then, but I’m not ready for implants yet.. I still have some hearing even without my hearing aids and I’m not ready to give that up yet. Some days are better than others. When I get to the point that every day is a BAD day and even the hearing aids are not helping, I will begin to consider making my next step to cochlear implants. People think hearing aids “fix” my hearing but fail to remember that it’s just like any other disability.. crutches don’t make a one legged man suddenly have two legs again.. the sound still travels through my damaged ear, so the sound is still distorted, it’s just louder and helps my brain to try to pick out words that are familiar by sounds. Lke f u rd a sntce tht ist spld w al th lttrs, u cn stl rd it f u pay cls attn and thnk abt it hrd. ;-) Now, imagine trying to read EVERYTHING like that… that is how hearing is with me… it’s not easy and I have to really think about what I hear to piece sounds together to what is familiar to me and what I know already.
Right now I wear (purple) behind the ear hearing aids. The small in the ear aids won’t work for my hearing loss. I still can’t hear whispers, I can’t hear you in the dark (I can “hear” you, but can’t hear the words), I can’t hear you if you walk behind or in front of me talking, I can’t hear you if you look out the window in the car and talk. We live in a hearing world and people are “lazy” when it comes to speaking. People talk walking around, don’t think about making sure their face is not covered by the pot hanging on the pot rack, look out the window and point at what they’re talking about, talk with their hand over their face, mumble … these are all things that are difficult for me. My children still get frustrated with me daily and at least every other day, one of them cries out of frustration of trying to talk to me because they have to repeat themselves MANY times and speak very loud and clear. Mornings are hard for me. Music is hard for me, it is more of an annoying “noise” than music anymore. I can’t watch tv or movies without captions. I text and email EVERYONE. I rely on my husband to make doctor appointments for me. I can’t call businesses or potential clients to discuss important things. I can do quick phone calls with *some people, it just depends on the tone of their voice because I hear some tones/voices better than others, and, some people are just better speakers than others. I cannot hear voices with heavy accents, and I feel bad because I don’t want to sound prejudice to potential clients, but I simply can’t hear their words, at all.
Some very wonderful things have happened to me though. I spent a LOT of time crying over all the things I could not do anymore. I was angry that I would never be a nurse or a midwife or any kind of care provider that I had really hoped to do. I was given this amazing opportunity to go back to college and get a college degree, up to my phd if I want to, and it’s paid for as a hearing disabled person now. But, that means I have to go and fight being able to hear my classmates and professors, and means I have to pick what to do “when I grow up” and that was another really hard struggle because so many careers require you to be able to hear, be able to communicate with clients and be able to have phone conversations (there ARE ways to use the phone as a hearing impaired person, but they are more difficult for both parties and people become very impatient). I am trying to learn a new language, sign language… and will teach my family so that if/when we NEED it, we can communicate easily. That camera purchase I made the month I lost my hearing 2 years ago, has been my saving grace. My world is very visual now. I walk on the fine line between the hearing and deaf world. My toes are barely hanging on to the hearing world, but I will white knuckle it to the end. I do very well face to face with my hearing aids and people who are understanding of my hearing. I find that as long as I’m honest about my hearing, people are pretty good about standing in front of me to talk. I have grown to LOVE photography because it is a way I can express myself visually. I can capture life, capture my childrens smiles, their look of curiosity as they dig through the sand or creativity as they paint. I don’t have to hear to do this work, I just have to see with my heart and it shows through my work (at least, I hope it does). It has changed my life. It has given me new hope. It has empowered me to keep my chin up and just embrace what life has to offer me, because, that’s all we can do. We may be given some pretty crappy cards sometime, but it’s our choice to lay them down and quit or to bluff our way through and come out winning. I totally bluff my way through… sometimes people have no clue I am hearing impaired unless I tell them because I fake it and I’m good at smiling and nodding. I’m still a wife and a mom and a friend and a very able woman…. Even if the day comes that I can no longer hear my childrens sweet voices, I will still be able to see their smiles and feel their arms wrapped around my neck and THAT, my friends, is what keeps me going….that, and some pretty freaking amazing friends, family and the most supportive and loving husband who I know will always be there to catch me when I need him to.
For more information about her Photography please email her at Nhance5@verizon.net
This is a little video that Tasha made capturing a day with her 3 youngest ones A day in my life
Go check out her photoblog NHance Photography
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