What have I lost?

A recent conversation with a friend made me think about what I have lost in my life, and inadvertently what I have gained... not possessions or money, but experiences... the experiences that I have both lost and gained by being raised Orally, and the impact that has had in my life. As a child and as a teen, I was never given the opportunity to be around others like me, others who couldn’t hear, let alone understand the sounds coming out of peoples mouths without straining to see what was being said... I lost that experience with people who truly understood what it was like to be me. I lost the experience to become truly fluent in a language, in a culture... it is coming to me now, as I immerse myself in My Deaf Culture, but I was always the odd ball out growing up... Yes I can speak, yes I can lipread, yes I can write (sometimes even eloquently) , but I was never given the chance to become fluent. I can not speak or understand with ease in English... even when writing, I make many mistakes, it takes effort, and I am always second guessing myself. When I sign, things are easier... even though I was denied that language growing up... but I do not try to fool myself or anyone around me... I am not a fluent signer... one day I hope to be, but as of right now, I am not.

I lost the ability to truly connect with people around me on a deep emotional level... I can look into someones eyes and see some of what they are feeling, but I could not, especially as a child, express my feelings, or understand how others were feeling... not because I didn’t want to, in fact, I wanted to badly, but I couldn’t... I didn’t understand, I couldn’t connect, I really couldn’t communicate, in the purest sense of the word. I am learning to now... but those years before... I couldn’t. The one way I had found as a teen  to feel like I was “connecting” to someone else, was promiscuity. That caused many issues in my life... but that is one experience i have “gained” that of being called a slut... and of knowing it was true. I felt people only liked me if I were to “give” them something, and humans are pack animals... we need to feel liked, we need to feel as if we belong... and this was the only way I knew... when I was, honestly, being a slut... I was not the weird deaf girl, I was not the girl who couldn’t pronounce words, or who said what too many times... I was just a girl... who someone “cared” enough about to have sex with... and there... I went very wrong.

I hated myself, I was afraid of myself, I hated my deafness... and so much more about me, and what I had to do every day just to get by. I plastered a smile on my face, I always said yes to everything, but all I wanted to do every day, was to be out of this hell I called my life. I wanted to be done with speech therapy, I wanted to be done hating myself, I wanted to be this picture perfect person that my parents, and I, thought I should be... straight A student (I was close), hearing, popular, etc... I wanted to be almost everything I wasn’t... when I wasn’t day dreaming about this other person, the person who I thought should exist... but didn’t... I was contemplating the ways I could kill myself, to get me out of this hell that was my existence... I tried... and it was how I knew  I was alive... because I could feel myself getting so close to death... then come back... only then did I know I was actually alive. To keep the feeling of being alive, I started to cut... because there was physical proof of my being alive... I could see the blood dripping from my wrists... from my legs, from my stomach... I could feel the pain of the razor, or what ever sharp instrument was handy, cutting into my skin, reminding me that I wasn’t a shimmer of life, but actually alive. 

I realize, I lost so many experiences, I really did... and most of what I “gained” experience wise was negative... the promiscuity, the speech therapy, the ostracization, the suicide attempts, the fear of being myself... how would my life have been different if I had been allowed to know ASL from the get go? To have a community of people like me? I may never know...

My life now is very different from my life growing up... change #1... most of the time... I am actually happy... the smile on my face isn’t plastered up... most of the time it is real. I  have met people just like me, who were raised to try and be as hearing as possible... but in reality... we were just deaf, and who like me, wonder what life would have been like if they had the chance to have their natural language. I have met people who have had childhoods very different from mine... and none of them regret their childhoods, or wonder what they have lost from being raised with ASL...

For other deafies... What is your story? where do you lay on the path between deaf and Deaf? When did you find your Deaf identity, or have you found it yet? It took me 22 years... but I have found mine, and my home in the Deaf Community...

For parents of deaf children... which path will you take? The oral road? maybe CI or HA? So your children will be come... “hearing”? just as my parents did? or will you take the path where your child has the chance to grow up having connections with people? Where they do not have to feel they are less because of an ability they can not control? 

For hearing people... what have you learned?

No more energy

So I’m running out of energy… I’m becoming drained… and all I want to do is sleep… why you might ask… the hearing world is getting me down. The hearing world… treating me like a second class citizen… treating me like I am someone to be pitied… someone who needs to be helped… someone who can’t do anything for themselves… that is why. I am not a second class citizen, I am a full, happy (normally), healthy (normally) Deaf person, I may communicate differently then you (the hearing world)… but that doesn’t mean that I am less than you. I am tired of the audists getting everything that they desire, younger ages for CI implantation, taking services out of the hands of the ASL geared Deaf Schools, and putting “organizations” such as AG Bad in charge of them… but still having the Deaf School pay for them. I am tired of going to the store, and having the cashier look at me like I am a blibbering idiot because when they talk to me… I sign to them. I am tired of having to use my voice all the time at work, exhaust my energy lipreading at work, then if something, ANYTHING goes wrong… its blame the Deaf Girl. Its no wonder I didn’t accept who I was for such a long time… why I tried to live in the hearing world, why I tried to convince myself I was a broken hearing person, and Hearing Aids would help “fix” me… its no wonder I thought I needed to be fixed… the world around us shows us this… tells us we need to be their idea of perfect.

Its days like today that I wish, so much that I could travel to Eyeth, a place where I would be accepted for who I am, for what my ears can and can’t do… for the language I use… and for my place among the Deaf Community. The thing that makes things harder, at least for me, isn’t only complete strangers giving me the “death face” as I like to put it (the look on someone’s face when they find out you are Deaf, and you can just see their ignorance and audist natures shining through, almost as if someone has died, because being Deaf is obviously the WORST thing in the world) but when that “death face” is seen on someone’s face that you care about, say a sibling, a spouse, and heaven forbid, a parent, it makes things so much harder.

I grew up oral, with moderate loss, that we were told would get worse over time, but my audiograms stayed steady. I have NEVER been able to completely understand what was being said to me verbally, lipreading helped, but it isn’t a substitution for an accessible language. I had speech therapy 3 times a week, for an hour or two… I hated every moment of it, I wanted to be a normal kid, one who could understand what her teachers were saying, who didn’t make a fool out of herself when she misunderstood her “friends” saying things in school, one who understand her art teacher wanted a “new sculpture” not a “glue sculpture”, one who didn’t get made fun of in school because of how she talked, one who wasn’t always picked last to play on teams in gym class, the one who didn’t get stuck with the drums in music class, because everyone else could sing right… I wanted to be normal.

I remember on the first day of school, when I started kindergarten, I could say 3 or 4 words… and my mom had to go into the classroom and tell my teacher I wasn’t stupid… but “Ash has a little problem with hearing” no one, including my teacher understood me… I was struggling to read my teachers lips (not that I understood I was doing it, but that’s what was happening) to understand what I needed to do. This is what happened every year of school, then when I was 8, I thought things would change, I thought that I would be able to talk “normally” that somehow I would be able to instantly understand everything, why… well I was getting this “magical” thing called Hearing Aids, because the state finally agreed to pay for them. So I got them… and things did not change, I tried really hard, I tried to understand what was being said, I tried to become this “normal” kid… but then at school I was bullied because of my hearing aids, because I still talked funny, because I still couldn’t understand people; and now, any time I started a new class, my mom would walk in, and inform the teacher that I had hearing aids. I thought this would make everything better, instead it made things worse.

By middle school I was no longer even wearing my HA’s at school, I would leave the house, put them in my pocket, and be on my way. The only time I wore them were at student teacher conferences, where I would have my hair down, so no one could see them, I was put into “special” classes because everyone around me still through I was stupid.

 In High School, I decided that I would just learn things on my own, I was still going to speech therapy, but how much is speech therapy going to help a person who had been in it since she was 3? I wasn’t allowed to meet anyone who was deaf, anyone who signed, because that would hinder my speaking ability… but finally in my senior year of high school, I told my parents in a not so eloquent way, that I would no longer be taking speech therapy, instead I would attend the local community college and learn sign language. I decided, hey this is college, people won’t make fun of me for my hearing aids, I can wear them. So first day of class, I walked in, I was by far the youngest person there, the professor, a wonderful Deaf man, walked in, and started signing away… I was BLOWN away. That first day he had an interpreter with him, so he could get to know us, what we wanted out of the class, without having to put so much effort into reading our lips or having to write everything down. Most people said they wanted to learn because they were fascinated with the language, when it came to me I said that I had never been allowed to learn, because my parents were always told that it would hinder how I spoke, that I would stop speaking, and my speech discrimination (understanding the words coming out of peoples mouths) would go down, but I wanted to learn so I could finally understand what was going on around me, and hopefully actually learn something. My professor asked me how I saw myself, and I said, a hearing person who has problems understanding what is going on, or Hearing Impaired… he looked at me, and told me flat out that I wasn’t a “broken hearing person”, and before that I had never really been able to put how I felt into words, or at least not succinctly, and that everything would be ok… at that point, I didn’t believe him. He spent so much more time with me than he did any of the other students, we would meet before class, after class, and he would teach me more about the culture, more about the language, and it was so wonderful realizing that I wasn’t a broken hearing person, I didn’t quite feel like I could claim the d/Deaf Identity yet, but I realized I had nothing to be ashamed about being me.

The next year I went off to college, and I couldn’t find ANYONE who signed, so I went back to feeling like I was broken, like I wouldn’t be accepted. My school, just as in High School, gave me no accommodations. I didn’t get a note taker, I didn’t get CART, I didn’t get an interpreter, I got an FM system that wouldn’t work with my Hearing Aids, so I had to use headphones… and still not be able to understand what was going on. Things didn’t change again for the better until I moved back to Colorado; back to the state I was born. I got a job fixing computers, what I had been doing since I was 11, and that still has me placed firmly in the Hearing world. I was realizing the sounds that I could hear were becoming fewer and farther between, and since I hadn’t had an audiogram since my sophomore year of high school (why should I they were always the same) I decided I would get one. This audiogram was a HUGE shock to me… my hearing was declining, I was in the severe to profound range now… that is why sounds all together stopped happening for me… now it made since. I decided I would give hearing aids another shot, but I didn’t have those unrealistic ideas that the 8 year old me did, I understood they would just amplify what I could hear, and that they may help with speech reading (lipreading with sound). I still wasn’t fond of them, but they did help me understand when someone walked in the door at work.

This was also about the time that I decided I wanted to try and find Deaf people again, but I still wasn’t quite ready to accept that I was even deaf. Through the magic of the internet, I was able to find people who actually understood, and I met a man who is now a deaf friend of mine, who has helped me, welcomed me with open arms, and has shown me again, that I am not a broken hearing person, but that I am a full Deaf person. The changes made in just a few months astounded even me. I went from saying that I was Hard of Hearing to just telling people that I was deaf. I was finally beginning to accept myself.

 4 months later, after a broken ear drum and severe ear infections, I got my hearing tested again, only to find out that I had more “deaf gain” as a friend of mine puts it. I thought it would have affected me more, but it didn’t. I still use my hearing aids, but only when I want to, only when I must. I am not nearly fluent in ASL, but I’m getting there, I am signing on a regular basis, and at school or doctors appointments, I do not voice, but I let the interpreter talk for me, its easier that way, its more comfortable that way. You may wonder why I told such a long story, its because I want people to know where I’m coming from, because only when we know where we have been can we really know where we are headed. I have changed so much in my life, I have changed from thinking of myself as a “broken hearing person” to thinking of myself as Hard of Hearing, to understanding that I am deaf, to finally, embracing my Deaf Identity. I use an interpreter at every chance that I can, because only then can I actually understand what is going on, at church, at school, at doctors appointments. I have many people to thank, many people who I have come to love, and a wonderful community (both hearing and Deaf) who are there to support me, but there are still days when I just wish that I could travel to Eyeth, that Eyeth was real, and that I didn’t have to worry about lipreading still, that I didn’t have to worry about trying to understand, or be understood, but where I could use my natural language all the time.

My family is slowly coming to understand that I am not this broken hearing person they have always though of me as, but I am a full Deaf person… but I still see them give me the “death face” from time to time, especially if I ask them to repeat what they have just said, or give up and just go sit by myself on the side lines, watching the world go on around me. I am still rooted in the hearing world for work, though, hopefully that will end up changing for me, with a new degree in progress, new work opportunities, I would love to be able to work where I don’t have to use my voice… and I know that day is coming… it just isn’t quite on the horizon yet. I wish that I could go back, not to change my past, because that helps make me who I am, but to thank those people whom I no longer have contact with, mainly my ASL professor, and tell them how my world has changed, and for the better, and what an impact they had on it. I am tired… but I am just tired of being in the hearing world where no one understands, I know not everyone in the hearing world is like this, but so many are… and it is exhausting.

adjusting to my quiet life

so... I’ve had hearing issues my entire life, I would never have called them problems, just issues... I couldn’t hear what other people could, understand what other people could, but for me... that wasn’t really a problem. growing up with a stable 45 db loss in each ear... having hearing aids, being in the hearing world... it is just how life was. Then, within the last few years, my deafness has taken a drastic incline, I have become much more deaf. I am now only hearing above 95 or 110 db depending on the ear... and I’ve been wondering, am i missing something, even with my hearing aids? or is this how life is suppose to be?

This wondering has been a long time coming... I was so content in the hearing world, living in it, working in it, learning in it... that it has taken me a long time to realize, thats not my world... the hearing world is not where I should be, though I have been living in it for most of my life... I never really... fit in... I didn’t hear what other people said, I didn’t understand the words and sounds coming out of their mouth, but what I did do... was i thought deaf... if someone isn’t looking at you, they aren’t “listening” to you, its ok to wave to get someones attention... tell all the details about a story, don’t leave anything out, is there a tree in your story? where is the tree? where are you... spacial factors MATTER (because of this, in the hearing world... i’ve been told I tell pointless stories), tell it how it is, don’t beat around the bush that way... tell life how it is. No one in my life ever understood this before... not until I found my world, my community, those who I can, and do understand without the use of sound... my Deaf Community, where I fit in, where I belong, where I thrive!

so saying all of this, I’m learning to adjust, I’m adjusting to my Deaf world, its a big change from the hearing world I so desperately wanted to be a part of for 22 years, where I tried everything to be a part of, and in some aspects of life, its easier to adjust to the world I should have been in my entire life, and in other aspects... its still hard. 

I want to discus the hard parts first... most of my family, is hearing... or at least hearing minded... they don’t understand the world I live in... and some of them seem like they don’t want to. My hearing family, even with this genetic link to SNL deafness... is still very hearing minded, and they are having a hard time adjusting to my Deafness too... they don’t understand why they can’t just call... why I HAVE to text, why when they ring the door bell (or at least did) I didn’t come running to answer it... and mostly (especially at this time of the year) why I HATE family gatherings... and the simple answer I give them, doesn’t seem to satisfy them... but it makes perfect sense to me and quite a few of my friends... I’m Deaf... but they don’t grasp the meaning behind it... they don’t understand what that means for my life. 

I also work in the hearing world, I have little access to assistive devices, though they say they are “working on it” I have a captioned phone because I contacted the people to get it... but still... that requires me to try and work in the hearing world... I speak, I read, I lipread at work... I get exhausted... and I’m the only one conforming to their world... I, even with my HA’s on... have a hard time knowing when the door opens, when someone walks in, I have to lipread complete strangers on a regular basis... and I’m the one who gets in trouble if I can’t understand them... or if I even ask them to write something down... Its all on me.

My SO is hearing, and she doesn’t understand my deaf life... she always tells me she thinks I hear better than i really do... and gets mad when I have stopped pretending I can hear her, that I can understand her, because she asked me to... sometimes its easier to pretend you understood something than ask them to repeat over and over again... and still... not get it. 

I’m also having to use my HA’s 100% at work, and over 50% of the time when I’m with my SO or any of my family... when after a long day of “hearing” all I really want is to just be allowed to be Deaf... to sign, to be in my quiet life... but no... I’m still having to lipread... still having to voice, still getting corrected on my pronunciation... its an exhausting life.

But there are things that have made it easier... my transition... meeting new friends from not only here in Colorado, not only here in the US, but all around the world, who understand what its like to be Deaf. I have a community, a local one, as well as a global one. We may not always understand what the other is trying to convey, but we understand the life of a Deaf person.  I love my little community, all my friends I have made (most of which I haven’t met in person yet) but I still love them... they are my family, just as much as my biological family is. 

Another thing that has recently made me feel safer and more secure, having just a couple “assistive devices” at home, my complex was wonderful at getting me a flashing door bell and, the thing that has made me feel safe at home, is my flashing smoke detector. I was so nervous and scared to ask for even the possibility of getting these things in my home, because I have not only been told horror stories about trying to get into an apartment because of what society sees as a disability, but also people being forced out of their homes because they informed their complex of their “disability”. My managers were wonderful at this, they had no issues ordering and installing what I needed to feel safe at home, what I needed to feel like I was at home, and that my home was suitable for me.

I have also been using ASL much more than ever before. I was denied that right growing up, I was told that I could not learn it, because then... I wouldn’t speak... I was told that I couldn’t meet any Deaf people, because then... I would become Deaf... I finally told my parents at the age of 17, after 14 years of speech therapy, that I wasn’t going any more... I didn’t want speech therapy, I didn’t want to voice, I didn’t want to use my hearing aids, I didn’t want to lipread, I wanted to sign. I enrolled in ASL my senior year of high school, and learned some ASL, was amazed at how much easier it was to converse, to understand what other people were saying to me, and to get my point across... then I went to college... and all my ASL died... I had no one to talk with, I had to voice, my school wasn’t giving me any support... I had to learn out of books... and my soul was crushed again... to try and get a little piece of me back, I flung myself back into the hearing world as quickly as I could... I got Hearing Aids again, I started using them again, I started voicing again, reading lips, refusing to let people know (as if they couldn’t just by my voice) that I was deaf... and while I thought I was getting myself back... I was really just loosing little pieces of me all over again... loosing what I had found, loosing who I had found, and who I had liked... then I got here... and I found home, my real home... not just with a couple people who sign, not with the family I had grown up with, but my HOME... with people who were like me, some grew up oral... some grew up signing, but all were Deaf, all were welcoming, and all were willing to help me find out who I was again, and find that person who had been so confident, who had been so happy... and she is realizing again... (maybe even for the first time) that it is safe to come out and play... safe to be Deaf, safe to be voice off, safe to be... home.

So when I started this blog... I was wondering... am i missing something, even with my hearing aids? or is this how life is suppose to be? and I can safely answer... this is how life is suppose to be... this is how my life was suppose to be from the beginning, I was suppose to be surrounded by a community who loved and accepted me for who I am, and my hearing levels... not for how well I could speak, or if I could talk on the phone... but for who I am, and who love me for me, without condition of my quiet little world I live in.

been doing some thinking

so i've been doing some thinking... about what I need, what I want... and I've come to realize... I'm stuck between a rock and a hard place... I don't know what to do. I'm trying to be rational about all of this... and not let my emotions get in the way as they normally do... but the thing is... we are emotional beings... how can I not let my emotions help guide me in decision that could affect my entire life?

I was recently introduced to, for lack of a better word, I will say article... yes it really is more of a blog... but still, the truth rings out from this. Sick systems: How to keep someone with you forever. Its really quite interesting... the four basic rules of keeping someone with you forever, either a loved one or an employee, the rules are basic, they will apply to anyone... and I'm starting to wonder... have they inadvertently been applied to me?

Rule 1: Keep them too busy to think... I am constantly doing something, working, lipreading, voicing... I really don't have time to think... at home... she doesn't want to relax... she wants to be "doing something"... wants me to read her lips... wants me to be driving, not playing on my computer... and the attention seems it needs to be on her... is she keeping me too busy to think? That I'm not quite sure about...

Rule 2: Keep them tired... This I can easily see... she keeps me up long past when I would like to sleep... and when I would like to sleep in... that can't happen... why because she... wants to "do something"

Rule 3: Keep them emotionally involved... when I feel like I am starting to break down... she turns things toward herself... I am not allowed to be unhappy... I have to keep my eye on her... I have to try and make her happy, but rarely is it the other way around... and that very easily brings us to rule 4...

Rule 4: Reward intermittently... when she wants something that I don't want... she will make lists of what it will take to get me to do what she wants... and give me little bursts of hope that things will change. Every time that I am close to calling things off, or taking a break... she gives me a little glimmer of hope... she starts signing more, she does more things on her own (like get her own water), she starts to be sweet, cuddly... but then... just as suddenly as it started... it stopps... leaving me almost desperate for more, and willing to do *almost* anything to get more... and generally... I give in to her will... into her wants...

Ok... now I know this is partially my fault, because I let the cycle go on... but I am human... we have a natural desire to find love, to find companionship, to have hope, closeness... and this is why these 4 simple rules work so easily... and reading this blog, it got me thinking... talking with a few friends... it got me thinking... is this what I want? what I need? can I think logically about this situation, and get the optimal outcome out of it? what is the optimal outcome?




Well... I think i need to start with some back story... I have been in a relationship for 4 years... and when we started the relationship... everything was... absolutely wonderful... she was understanding, we didn't get frustrated with each other... even though I had to read her lips, and both of us knew very little sign (I'm Deaf and she is hearing), and it seemed like the perfect combination... and it was great for a year or so... then I started to go on a journey to figure out who I was... I was loosing more hearing, and less and less willing to use my hearing aids that didn't really help anyway... and she was being influenced by her family... and we were both, really just going in opposite directions... or starting to at least. On the outside, we were still the "perfect couple" all of our friends said that they wished they could find someone like we had found each other... but even by that time, we were starting to wonder if their words were true anymore... if we still wanted the same things, if we could take care of each other like we use to... or if we even should.

Then skip to about a year and a half ago... we were starting to fight a lot... but we were still together, we still loved each other, we could still see our lives continuing to intermingle... and... we were moving, creating a new start, we were moving from Flagstaff to Denver, I had family here, she was going to be student teaching... and we knew it would be a rough road... but what we were hoping was that love would be enough... that our love would get us through the hardest of times. So we moved... and my hearing was getting worse, and her patience (mine too, I'm not going to lie) was getting thinner and thinner... we were connecting less and less... we could no longer sit for hours and talk about things like we use to... I couldn't grab the vocal clues any longer, and was relying completely on lipreading... and starting to decide that I was going to have to find someone who understood what I was going through. Financially it was really hard too... I was working two jobs, while she was student teaching... our income had been cut in half... while our bills went up. At that point, I had to make a choice.. her bills or mine... and because I loved her (undoubtably more than I loved or even accepted myself) I chose hers... this caused more issues... because as she got a job, she didn't understand that we still needed to pay my bills, and pay the back pay on my bills as well... looking back retrospectively... I realize my choice to choose her bills over mine, not a good one.

When she finished student teaching and got a job, (although not 100% in what she wanted) it was time for christmas... and after 6 months of me working 2 jobs and paying for as much as I could... we had no savings, no nothing... but still... she wanted to go "home" for christmas... this is when I should have started to see things were very, very wrong. I feel as if Colorado, is my home, she doesn't... and she still (to this day even) sees her mom and dads house as home... I'm very much into the belief, that home is where your heart is, and I thought... my heart was with her, and hers with mine... I think I may have been wrong.

Now look back to about... maybe 6 months ago, I started to really figure out who I was... I couldn't, and wouldn't lie to myself or anyone else... I was not this "hard of hearing" person I was trying to convince myself so desperately I was... I was "so far gone" I couldn't even attempt to become hearing... but I was deaf, actually deaf, I was still very hearing minded... but i was deaf... there was no way around it. So I started to look at sign language again... because the few people I had met in college who were Deaf, it was so much easier conversing with them than with any hearing person I knew... even though, I would never dream to tell myself that I was even remotely fluent in sign... it was still... easier... easier than reading lips, easier than misunderstanding half of what people were saying...




Then I met people who changed my life, for the better, people who understood how it was so much easier to communicate in sign, people who were Deaf, people who helped me find who I was... and I wanted the person who, despite our issues, I still loved, to become part of that with me... to learn what was becoming my language, and communicate with me in that... and hopefully clear up some communication issues... but for the most part... she still doesn't...




For the past 6 months, she has been wanting to move back to Arizona, where I don't want to be, because her family is there. Yes I understand why she wants to move... but she doesn't seem to understand (or care) why I want to stay. My family, my community, my friends, they are all here... not 900 miles away in Arizona. Yes my mom lives in California, but my sisters, my nieces, my nephew... all here...




so those are the facts... now where does my potentially life altering decision come in you may be wondering? Lets go back to the first part of the blog... the 4 basic rules for keeping people with you forever... I'm beginning to see my relationship as toxic... I'm not happy at home... I stay at work late, I don't connect with her anymore... and its beginning to feel as if staying in this relationship is emotionally abusive... maybe to both of us. Its tearing our spirits apart... and I think I'm going to have to choose... do I stay or do I go? Not only to Arizona with her for what she calls a "trial" move... but with her... do I keep in this relationship that I have devoted so much time and energy to, and so much love to, but where I am not happy, and frankly neither is she... or do I risk making what could be a huge mistake, and cut the relationship off before we both get hurt worse? I know that if I do this, it will be hard, financially, emotionally, heck, even spiritually... and I'm scared... what if I do it... and it turns out to be a huge mistake? But at the same time... what if I don't... and that is a mistake? Is there any right answer here? Is there a right decision to make? what do I do?

I know what I want, I want to be happy, I want to be healthy, I want to live a life where I can be in silence and not have the people closest to me judge me for that... but be able to communicate with me in a language that is so much more natural for me, have people come to me on my terms for once, rather than have to jump through every hoop for them... and to be loved for me, not for being a "broken hearing person"

I just want to be loved... and I think that is part of my problem... because she does love me... in her own way... and those intermittent rewards she is giving me, that is what I live for in our life together... but... is that enough? Mentally... I am swimming... drowning... almost to the surface, but not knowing which way is up... I'm not sure how much longer I can hold on... before I break... which is surface, air... and which is water? of this... I am not sure...

a conversation with my audi

This is what happened after requesting a previous audiogram from my old audiologist. 




Me:yes I got it, thank you! I'm amazed at the changes... over three years, almost to the day... major changes. The ENT said he thinks it is genetic... but we are doing tests to be sure. Thank you!

Audi
I'm sorry -  Are your ears still functional (that is, can you use hearing aids and get good benefit even though your loss is severe/profound)?  Deb


Me.
yes and no... I have the phonak Naida S UPs... so I am getting the access to the sound that I need, but my speech discrimination has gone down to about 25%... so I'm not understanding much at all. They also have been having the tendency to give me headaches when used for longer than an hour or two at a time, and I get dizzy pretty fast when wearing them. And even though my current audiologist checked my comfort level, to be sure that loud sounds don't hurt... sometimes they still do... having to do more fine tuning I think. They were much more useful in July then they are now... at that time my left ear was at 80 db and my right ear was at 90... 

Ash

P.S. You don't have to be sorry... I've known this day would come for a while now... so I've been preparing. Finding the Deaf Community here has been an absolutely amazing experience, and my eyes have been opened to a world I never knew existed, never knew I could be a part of. I sign nearly fluently, it is my main mode of communication now, though I still lipread and voice for my clients at work, but I'm finding my way home, to people who understand me, and I them. The main reason I'm even seeing the ENT isn't necessarily because I'm worried about what is going to happen if I loose all my hearing... but more because I want to be sure there isn't something physically wrong that may affect other parts of my body. I'm finally happy being Deaf... I don't HAVE to ask people anymore, what? sorry didn't catch that... or try to pretend that I can follow conversations where there are multiple speakers... I have learned I don't have to apologize for who I am, who I have become, and that has made all the difference.

The simple words of saying I'm sorry may not seem insulting to many people... especially when it is over "loosing" a sense... and... I can't really say that I was truly insulted... but I did feel the need to educate. I have never had perfect hearing, I have always had some loss... though it has never been to the extent that it is now... it was never perfect. Its taken me years to figure out who I am, where I belong... and along the way I have had the numerous... "i'm so sorry you can't hear" or the "I will pray that Jesus gives you your hearing back" or the "you poor thing" it happens... too often for my liking. And for such a long time... I thought that I was wrong, that someone made a mistake while making me, that I was less because of my being "less than perfect"... but then... I found the Deaf community, I found sign language which came so naturally to me, in a way speech and hearing never did. Things are no longer muffled... but the sign, they are clear... they are understandable... they are nothing less than beautiful. I wish that I could show people how I see the world around me, how I perceive it... with and without my hearing aids on.

Let me draw a mental picture...

without my hearing aids...

science, you feel the air all around you, the slightest vibrations, you see the beauty of the earth... the colors seem so distinct, magnified almost... you see the people around you... some of them walking in their own little world... some of them moving their lips... rhythmically... you may wonder what they are saying... but normally... you know it is of little importance. You walk and see a friend... one who communicates on your terms... with their hands and eyes instead of their mouth and ears... and this wonderful conversation follows... and you see the pictures moving infront of you, you see their message drawn out like its a movie... and yours is the same... it feels... beautiful...

with my Hearing Aids...

noise, all the things that people with normal hearing learn to tune out... the noise... the fans in the background feeling as if they are jets going off in your ears... after a few minutes... your eyesight feels as if it is starting to go... it becomes fuzzy as your head begins to hurt... because... this isn't normal, this isn't natural... this isn't... you. You have to concentrate, trying to read what little there is to be shown on a persons lips, to try and get the meaning... and try and connect it with the noise blasting into your ears... now... imagine something dropping a few feet from you... it feels as if it is right there... right in your ear... drilling a hole into your head... and then you remember, you are trying to have a conversation with someone... so you concentrate on their lips again... you pick up... "blah blah try blah blah blah blah blah home blah blah blah with blah blah blah fun" what could that mean? and the words you caught... are they really the words that were said? there is no way to know... so you smile and nod... the sounds in your ears just getting louder, and louder... you just want it to be... quiet... to be able to understand... 

in the Deaf community... I am home... when I am forced into the hearing world... I am an outcast, a stranger... lost... so there is no reason to say I'm sorry... there is no reason to "pray for my hearing" but there is every reason to learn my language, to interact with me on my terms, only then can you see who I really am... because only then am I home. 

getting back to me...

so its been too long since I've actually written, much of anything... a few day by day things... but nothing much... nothing that actually meant anything... and even now I am finding it hard... I am finding it hard to make meaningful words come out... and i'm not sure why... it could be because i haven't written in so long... or it could be because I'm so distracted to be able to write anything meaningful... I want to... but I think I need to find myself first... but writing has always been my way of finding myself... its easier than speaking, it has more depth to it... theres just so much more to it... it can be more thought out than spoken language... and at the same time... it can also be more impulsive than spoken language. For me... spoken language isn't everything... that might be because I can't hear it without my hearing aids, or because even with my hearing aids I don't always understand everything... Yes I can read lips, yes I can speak well... but that doesn't really make spoken language accessible to me. Writing is much more accessible... sign language, oh how I love sign, that is my language. Not while I was growing up... but now... it is the one place where I feel as if i'm not wrong... like i'm not a broken hearing person... like I can just be deaf... where I understand everything, or most of everything... where I am... free to be me. even the written word is not as versatile, expressive as sign language, sign is my home... and I am realizing that more and more every day... understanding that I am not "hearing impaired" I am not "Hard of hearing" but i am deaf... and becoming more and more Deaf. and I am fine with that... I really am...

That is all I have time for now... but hopefully soon I will have time to write again... time to find more of myself... time to relax and be me...

Gluten Free Living

So Amber and I are going gluten free, though at times we feel like our options are limited, some of my friends have told us, do not feel that way. So here we are, trying not to feel like we are being limited, we can still have pasta, we can still have meat, we can still have just about anything. We can't do any prepackaged meals any more, because the majority of them have a lot of gluten. I am also doing what I should have been doing for a while, going lactose free, so no "real" milk (which I haven't been doing for a while) and no "real" cheese, which makes me sad. I have been doing rice cheese, which is surprisingly yummy. So here are some pictures of our first attempt at making gluten free pasta.
First we start out with the recipie



















Then Some of the ingrediants

Then the cutting of the pasta

Then Cooking it!

We served it with an artichoke pesto sauce, which is amazing. All in all, the pasta was pretty good, it was a little slimy, I'm not sure if that is because it was gluten free, home made or both, or just that we weren't sure how to do it. We are going to try it a little different next time, trying to get the pasta thinner, if anyone has any suggestions, it would be wonderful!