A Deaf In The Family – 1.0

Slyfoot said he was half deaf, half blind, and half crazy.  He said I drove him sane…  

I didn’t think anything he said about himself was true.  I was a realistic, but when it came to people, one on one, individually, I was an optimistic.

 People say all sorts of weird things about themselves on the internet to make thems sound interesting. I’m not sure all those particular ‘half’s’ are all that interesting, but I thought it was just an attention grabber.  

I didn’t know Slyfoot, or Sam as I came to know him later, irl (in real life).  I just thought he was some gamer/hacker/computer geek who was way too into Linux and rosaries.  I never put it all together until we started talking in earnest–and that didn’t happen until after the dream and we were making plans to get married.  By that time it was too late.  God had already let me set my own trap and watched quietly as I walked right into it.  

I couldn’t blame Him. I had given him permission.  I’d invited him to in a flippant moment.  Truth be told, I had practically dared him to.  I didn’t think he’d take me seriously, and I never imagined it would end up the way it did.

It all started two years after my divorce.  I was in my mid thirties.  I had four children, but only the two youngest lived with me: Erin, my daughter, and Josh, my youngest son.  My two older boys, Benjamin and Bryce, lived with their father in the same area we had all lived together before the divorce: Katy, Texas.  

At that time, I lived in the northwest of Houston in a decent, inexpensive (relatively speaking), townhome apartment, struggling as a single mother still having a difficult time with my ex, even two years after we split.  

My father told me to start dating.  At this time, my father had been divorced three times and married four times–twice to my mother.  I told him I would work on that, with no intention of doing so.  I gave the appearance of respect.  I didn’t tell him that he was the last person I’d take advice on romance from, or that I couldn’t understand why he and my mother decided to get back together with him. But being my dad, I did listen and I thought about what he said, but not much more than that.

In The Church of Jesus Christ of Latter Day Saints (The Mormons) we have Wards instead of a Parish.  And instead of a parish priest, we have a Bishop.  You can’t switch wards or bishops, as some people outside the Mormon church do, with some special exceptions.  

None of the clergy in the Mormon church is paid.

Temples are not like Ward buildings, where Mormons meet every week to partake of the sacrament, attend Sunday School and auxiliary meetings.  They are sacred places where ordinances are performed that tie us to our families for eternity and give a glimpse of heaven.  Only worthy members, those with a recommend, are allowed in the temple.  To obtain this recommend, members have to adhere to the Word of Wisdom–a guideline to a healthy, God directed/centered lifestyle–pay their tithing–1/10th of their increase, be interviewed and found worthy by your bishop and your stake president, who is a little like a Bishop of the several parishes in his district.

Sometime after my father had told me to start dating, I went in to my bishop for a temple recommend interview and he,Bishop Slack, told me that I needed to start dating.  I laughed nervously and told him that my father had said the same thing just a few weeks earlier.  

I made no commitments and didn’t do anything more about that admonition than I had my fathers.

When I went into the interview with the stake president, I didn’t expect much small talk.  Stake Presidents have even less time to themselves, and more appointments to get to, than bishops. It was a bit of a surprise then, after the stake president started with the question on how my life had been–the trials of single motherhood, how hard that is in a ward full of functional, intact families–that he told me that I needed to start dating.

I laughed and decided that I better take the advice before one of the Twelve Apostles called me.  I didn’t want to take a chance on getting all the way up the chain to the prophet.

I started to take the idea of dating seriously, and tried to be open.

While I was trying to put together in my mind what I wanted from a potential husband (something I never really did when I was young) I kept writing and stayed in contact with most of my family and friends through email, livejournal (the precursor to “blogs”) or instant messaging.

Writing consumed most of my free time at this period in my life. It was a good diversion from feeling sorry for myself, my situation, being angry at the ex, and trying to adjust to being a single mom.  I was delving into scifi, something I hadn’t really done before, and my first serious foray was a short story called: A Rock and a Hard Place. I posted on my livejournal and it went like this:

Richard “Rock” Klein

Captain’s Log 14.10.2665

Outside Uranus (isn’t that ironic)

Kerry Portsmith Station

Docking Bay 24

 

They say space is cold. But it’s not *just* cold. No one has ever really felt how cold it is and lived to tell about it. We know instinctively that anything so vast and so empty must be cold.

 

The irony is that all the things we spend time with while in space also make us feel cold and empty. We travel in cold metalic ships from cold empty space to cold empty space.

 

Machines have no disability like perception. Filled with Artificial Intelligence and hundreds of processors heating up their hard drives, they are still only metal and plastic. They don’t care if they sit in space or in a shipyard for twenty years. They do not desire warmth and companionship. They just exist.

 

If you have one of those new bioships it might feel a little more like a horse than a cold lifeless THING, but in the end, it’s still a machine. It gives out as much personality and intelligence as an animal and it only lives to fill it’s purpose. It knows exactly what it should be and do. There is no goal for a spaceship to one day be a station. It is what it is and will never be more.

 

We try to fill the spaces with ego or warm it with personality. Those of us who spend so much time in space hardly know what exaggerated bravado is. We believe the lies we tell ourselves. We believe all the fantasies we create about ourselves and the things… and people, we love – or maybe it’s just ‘want.’

 

I’ve given up trying to tell the difference between love and desire. I just want warmth.

 

We leave a planet’s atmosphere to be greeted by a sheet of black with pinpricks of light. There is so much empty blackness between each point of light, that space seems cold even without feeling the temperature drop. We spend much of our time trying to make it feel warm and filled.

 

The ship is cold and empty this morning, but it won’t be tonight. Tonight she comes.

 

Samantha.

 

Three years ago she warmed these halls. It was three years ago, but I remember it like it was yesterday. No one has ever turned me on, out and completely neutroned me like Sam did. We were good. No. That’s a lie. We were slammin’ fantastic. I know how good it can be between a man and a woman.

 

That’s why I hate her.

 

You might look at the logs from six years ago and come to the same conclusion I did: She could be a cold hearted bitch.

 

Still… a cold hearted bitch is better company than an empty starship.

 

It was just a little story told using the method of narrating from a captain’s journal, but there was a reply from someone who had never replied to my journal before and the comments after the story went like this:

Slyfoot: Hey, I’m a Sci-Fi fan!

You’ve really got me interested in what happens next!

I really am interested, it’s not just ‘coz it’s the polite thing to say.

Me: I believe you. You don’t normally drop me ‘polite’ comments just to tag my LJ, so I appreciate the attention. (and I’m serious about this story, so it’s good to have someone to help me gauge if it’s still interesting).

Slyfoot: Yeah, keep at it! Maybe you’ll be the next Orson Scott Card. 🙂

PS: I have a Star Trek tattoo, too, lol.

Me: Don’t worry, I won’t tell anyone.

A look backwards

Here is a post from Sam’s (My Hobbit) blog in 2003 I thought you all would find interesting regarding his CI and how he dealt with Division of Blind Services (and this was how he dealt with many, many people especially before he became fluent again in ASL). I thought you’d find it as interesting as I found it comforting to look back and see what a great thing the CI was for him/us.

Saw my parents yesterday. My mom told me that she had called Shand’s hospital and that they are going to get back to her about the cochlear implant surgery. I’ve already set the ball in motion by going to have the MRI, and I feel like it’s almost out of my hands already. It’s not, I know. I could say, at any time, “NO, I don’t want the implant.” But I haven’t done this yet. What have I got to lose by going through the operation, my mom and other people ask… well money for one. Plus I don’t know if the operation will work or not. It’s a gamble. But my hearing has gotten so bad that I think I’m willing to try this.

At first when you get a cochlear implant, everything sounds funny. The way the audiologist in Gainesville described it, people tend to sound like they have cartoon voices at first. Then once you get adjusted to the new way of hearing, people begin to sound normal again. This takes a few months of trial and error, with adjustments to the speech synthesizer. I don’t in any way see this as some kind of miracle or answer to prayer. I’m sorry, but this is purely a technological hack, and I don’t see anything divine in it at all. But my parents act like this is supposed to be some kind of miraculous gift from heaven. Bullshit. It’s a completely manmade solution to severe deafness. I think I am going to go through with it, but I don’t have any illusions or expectations that there will be some kind of miraculous turnaround in my hearing.

My digital hearing aids drive me almost up the wall sometimes. Unlike the old analog hearing aids, whenever the battery gets low on these they start to beep in high pitched frequencies. I tell people that it sounds like R2-D2 on crack. Heh heh! But I should be (and am) grateful for these hearing aids, since they were provided for by Division of Blind Services. Sometimes I feel a little guilty for accepting assistance from the state, but I shouldn’t. I worked for plenty of years, and paid plenty of tax dollars, so I accept whatever assistance I can get with gratitude.

I went to see Sue at DBS yesterday. We talked about the possibility of supported employment. Sue and I have a unique way of talking… I talk to her, and she types in Microsoft Word at 72 point font so I can read what she’s saying. Neat arrangement. I told her I think I want to wait until after I get the cochlear implant before deciding to jump back into the workforce again. I live on Social Security right now, and I’m able to take care of myself pretty well. I’m lucky to be living where I am. The rent is only $300 per month, plus $150 for food. So that’s only $450 + the telephone and Internet bill which comes out to another $50. So I can pretty much live on about $500 per month. It’s not a luxurious lifestyle, but I’m content for now. I often wonder what I’ll do once I move from this place. I don’t want to think about it, but I suppose I should. I don’t think I’ll be living here forever.

Sly

All arayed in spotless white…

Feel incredibly depressed today, but I also feel like I don’t have a right to be depressed.

A good friend passed away this week.  I knew there was trouble because I hadn’t heard from his wife in a while (with a personal contact).  His wife was essentially my mentor in ASL.  She is a professional interpreter who corrected me, taught me and helped me through my trials in the Deaf Community and with the problems of having a deaf spouse brings into a family.  I generally know enough now that I have been on my own in most cases regarding ASL, but when it came to family problems, she and her husband, who just passed, were always there to help us through them.

Before this friend passed away, he had been through a coma/stroke that affected his brain.  He almost died.  It was remarkable that he pulled through it.  The Deaf Branch prayed and fasted for him, and he recovered.  He was remarkably recovered, but there were still obvious new quirks that reminded us that he had not got back everything he had lost.  His wife spent a lot of time with him, helping in his recovery, the therapy, and just enduring the times when he wasn’t quite himself.  This is where we became more similar as a couple than we had before.  She had frustrations when her husband wasn’t quite himself like I did, and frustrations when her husband thought he could do things that he used to do before when she would have to remind him that it just wasn’t possible now, like I do sometimes too.  In this way we commiserated and supported each other.

Then her husband got cancer.  It must have been quite a blow to have recovered from one near death experience only to face another.

Her husband was one of My Hobbit’s dearest friends.  They traded hats like some kids trade CCG’s.

I asked My Hobbit how he was doing, because I could tell he was feeling low after the Memorial for this dear friend, and he  said: “I am doing ok.  I didn’t cry.”  And I said: “I cried for you.”  And I think I did.

I am very sober this evening.  I am glad that the challenges we have at our house have given us an opportunity to be so close and spend so much time together, even if it presents other challenges (like financial challenges) that are difficult to navigate. I am glad to have My Hobbit, for as long as I have him, and now I am even glad for the challenges that have brought us so low financially.  I get to be with him, my eternal companion, much more often than I would be if I worked.  I think, after the Memorial today, that I appreciate that much more than I ever have before.

Sticks and Stones May Break my Bones

I always thought the phrase “words can never hurt me,” was one of the stupidest ever uttered.  You WILL be hurt by words (fat, lazy, blonde, skinny).  You WILL be offended.  The actions of others WILL adversely affect you.  How you chose to act, however, is your own choice.  There is a universal truth that says: You can’t move forward if you are blaming someone else.  This doesn’t mean that they aren’t at fault – it just means that your personal progression is on your own shoulders, not theirs.  Their success does not diminish your chances of success (generally).   Taking offense may be natural, but letting it roll off your back can become just as natural.

If you are hard of hearing, it’s like being a half breed.  You aren’t ‘deaf’ enough to be Deaf and you aren’t hearing enough to be Hearing.  There are lots of miscommunications on both sides: One the Deaf side because you are “hearing in your head,” and on the hearing side because you don’t hear them clearly.  It’s easy to take offense, but it should also be easy to understand that there are cultural perceptions on each side that easily lead to ‘offense.’  Being in between should also help you understand that it’s not helpful to be offended.

Some people are trying to offend you, it’s true.  Nowhere is this more evident than on the internet where anonymity cloaks them.  But to stay offended doesn’t really hurt them and only harms you.  I think we have a century of clear examples that blame and taking offense does not move you forward in the macro – it can only be magnified in the micro.

So let it roll off your back and move further up and further in.

My Hobbit needs an upgrade!

I just put up a Gofundme campaign for my Hobbit’s Cochlear Implant Upgrade.  Visit it here: http://www.gofundme.com/5n569o.

Here is a bit of the background story: My husband Sam has Ushers Syndrome. He is deaf and rapidly going blind. In 2002, his mother convinced him to get a Cochlear Implant and his unit was one of the big Sprint Processor/ Body Worn CI’s like pictured above. Last year, 11 years later, it was so obsolete that we couldn’t find parts for it and the CI processor was no longer compatible with the programs used to update and calibrate it. So we applied for a new CI. Sam’s Medicare covers 80%, but the amount left was still about 1500.00. The people at Cochlear America gave us a generous waiver, but we are still responsible for about 400 dollars of the new processor, fees for follow up doctors (CI Specialists) visits, and the other necessities for upgrading to the new Nucleus 6 behind the ear processor (the object on the left is the CI part that is inside his head and ear and the right is the processor): Our budget is very tight and we can’t really afford 400 dollars, but without the CI, Sam is seriously sensory deprived. We are hoping our friends, family and community members will help us out with this drive to raise money for his implant.

To ASL or not to ASL?

I can’t seem to get my mic to work when I’m recording on my webcam from my laptop, so I made a video completely in ASL for Kickstarter. Should I use that, or go ahead and use my iPhone to make a ‘hearing’ video instead?

Here’s the video (for those of you who haven’t seen me do ASL before).  And yes, I know it’s not TRUE ASL, because we use a mix of PSE, Fingerspelling and Tactile Sign at home and it’s hard to get from that to true ASL unless I’m in a conversation with another person using it.

 

Prologue from Raging Bull

For those of you that helped me with this novella, there’s a sneak peak up at my artists/authors blog:

via Prologue from Raging Bull.

Feel free to repost and reblog!!!