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!

Yummy food!

So Amber and I have been trying to cook more, we made a wonderful dish with turkey in it, and it was really simple.

Brown the Turkey
add apple juice, a fresh cut apple, some ginger and some cinnamon, let the turkey cook on the stove covered until its done.
then take the turkey and the apples out of the pan, mix together some corn startch (1tbls) and cold water (2 tbls) and mix them in with the juices. let the juice thicken and serve on top of the turkey and apples!

We had that with some cheesy rice, which was also very yummy.
cook the rice, add a can of chicken broth, add cheese to taste. (the cheese we found works really good is the kraft mexican blend with cream cheese in it)

We had gone to a Chinese restaurant a while back that had a really cool idea for desert (it would have worked better as a desert if the oranges were sweeter though) I really want to learn how to do this to oranges.

 

We want to become better cooks, so we've just been playing around with food. Amber made a wonderful home made mac and cheese, and to spice it up we added turkey kielbasa sausage. Made with shells and Velveeta. it was wonderful. 

Do you have any family favorites for food we could try?

So I'm trying

So I'm trying out this blogging thing. I"m going to try to write at least once a week, I'm not sure how it is going to go, or if I will even continue this, but at least I'm going to try.

This Weekend my sister and her friend Rachel came up and we went to Dave and Busters. It was a blast. We had dinner and played games, Amber won 1000 tickets in one game, and Sherry won 500! Although we really learned how to pick the games that don't work... we found at least 3 or 4 that didn't work... that didn't give the tickets out... but the attendants helped us out.

 

After we went to Dave and Busters we played a wonderful game of Randomness called Quelf, it was so much fun, or as i was suppose to say most of the night, "it was so much fun, it was so much fun" Rachel had to attach three things to her in three different ways.

and then had to try to tie a tie... which she had never done :) Silly Rachel. So I tried to teach a drunk Rachel how to tie a tie, then Amber put it on her head...

All in all, I think it was an amazing night. I'll try to write again soon.