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.

Cats and Deaf Men

Discovery of the day: Squirt bottles work great on cats and deaf men.

When I’m outside and I need help, it’s not just a simple matter of waving in my window to get my husband’s attention.  With his RP/Ushers Syndrome, he can’t see me, and since he’s deaf, he can’t hear me.  I had a squirt bottle on my window (which was open) for my orchids, which I decided to try in a stream to get my Hobbit’s attention to come out and help me finish cleaning up the pool pump.  I gave him a little squirt (it barely reached him) and he came outside to help me!  It works!

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.

Getting Braille Note To Work With Linux – Guest Post by my Hobbit

My vision has deteriorated to the point where it causes a considerable amount of eyestrain just to read movie subtitles for a couple of hours. Reading books has become a luxury that my eyes can no longer afford. But don’t worry, there is good news!

Two or three months ago my wife ordered a Braille Note BT for me. The Braille Note QT comes with a QWERTY keyboard, but that’s not the one I have. The Braille Note BT comes with the standard six-cell brailler keypad, plus a few function keys. I had been wanting a Braille Note mainly to read books and to keep track of important notes. I also had a vague idea that I might be able to use it with my PC as a refreshable braille display, but I was worried that it would be too complicated to hook it up to Linux. But it CAN be done!

Understand that everything about the Braille Note BT (version 5.1) is designed to work with Windows. The operating system is an older version of Windows CE, and all of the companion software on the disk (ActiveSync, JAWS for Windows, KeySync, etc) is also designed to run on Windows.

Worse, there was nothing in the manual about hooking up the Braille Note to Linux. I have gotten used to using Slax Linux, a small “pocket operating system” which I run as a LiveCD, LiveUSB, and on my Hard Drive. I like it because version 6.1.2 comes with KDE 3.5.

The nice thing about KDE is that there is a feature in the font control panel that allows the user to quickly adjust all the KDE fonts to a particular size. This allows me to globally set all the font sizes for all the windows, dialogs, system messages, and menus all at once. I had always been maddeningly frustrated at adjusting the fonts in Windows. One of the core fonts in Windows is called “small fonts” for Pete’s sake. They might as well just call it “screw_the_blind_people.ttf” And don’t even get me started on the other tiny, anorexic chicken scratch fonts that most Windows programs use!

But, alas, I’d venture to say that most accessibility gizmos and gadgets are designed to work with Windows, so I had some trepidation about getting my Braille Note to work. Would I have to install Windows? And at first it looked like I would have to. I had tried installing ActiveSync under WINE, and it worked well enough, but it wouldn’t recognize any of my COM ports.

So I started hunting online for a solution. The percentage of people who use Linux is fairly small, and the percentage of BLIND people who use Linux is almost nonexistent. But they DO exist! I finally found out that a program called “brltty” is specially designed to work as a terminal for refreshable braille display. And after a few hits and misses, I figured out that I needed to specify the device name of the serial port (brltty -b bn -d /dev/ttyS0). After that, I read through the manual until I found out how to put the Braille Note into terminal mode (you just press T with the 2, 3, 4, and 5 keys). After that, I was all set! I was not only able to read the output of textmode console commands, but I was also able to run the nano editor to read books right off of my hard drive. This opens up a whole new world of possibilities for me: email, web browsing, irc chat, instant messaging, interactive fiction… all of these are available to me on a braille display now.

So my fears about using an older model of Braille Note with Linux were groundless, and now I have a way to read books and use my Linux PC in braille!

Euthenasia for the deaf-blind

About the case of the deaf blind twins that had themselves put to death because they didn’t want to live with being both deaf and blind.  They were deaf and going blind at the time they decided that life just isn’t good enough if you can’t hear and see (and you thought AUDISM was bad? What do you call it when the deaf think it’s so horrible not to be able to SEE that you should just DIE?):

http://www.newser.com/story/160965/deaf-twins-going-blind-die-by-assisted-suicide.html

I wanted to tell you why this was an evil thing these brothers did.

My husband has Ushers Syndrome and has been deaf since he was six and living with a deteriorating vision for most of his life.  He still tells tales about ‘blind camp.’  That was when he could still actually see.  Now, we have a blog that chronicles our life together, the adventures of the deaf-blind and we try to focus on the positive: https://withclosedcaptions.wordpress.com.

There is no cure for Ushers Syndrome.  Sam is rapidly losing the little vision he has.  He is having a lot of problems accepting the fact–despite everything we tell him–that he still has value.  There is not a job he can do that is more valuable to us than working at home raising the kids, but he does other things for me, like help me edit my work and research, besides being my emotional recharge, my spiritual rock and my best friend.  Society doesn’t value a stay at home dad very much, and obviously, from the above story, it doesn’t even really value a deaf-blind person.

This double suicide didn’t just affect these two brothers.  No.  This affected my husband.  If the deaf people didn’t think they had a value if they went blind, how can anyone expect society to think they do?

Katherine Sebilius’ said “Some people live, some people die” as if there were no value to a life that didn’t fit in a box on a chart in some census file.  This is exactly the mindset that these deaf brothers understood.

Every time my husband goes through a bout of depression, we struggle to show him how much he means to us.  You know who we have to fight?  That influence from the government, the media, and now these two deafblind brothers who think being deaf and blind is too much to bear.  They even use the excuse that they don’t want to be a burden to their family.  What did their family say?  They waved goodbye and had a ‘rich conversation?’  Are you freaking kidding me??!!

F*** you for not fighting this tooth and nail so I and all of my friends who are deaf and might one day go blind didn’t have to fight it. Screw you for going down silently to that last sleep.  I hope those deafblind brothers spend as much time in hell as we spend struggling to keep my husband uplifted and positive. (even though I don’t really believe in “hell”)

You think these sorts of decisions don’t affect other people?  You think they only impact the disabled, or the chronically ill? Think again. It may cost me the best man I’ve ever known.  Friends and family say these two brothers were good men.  Take a look around you. Do you really think society can afford to lose a lot more good men?

As for me and my house…  We will fight tooth and nail to continue to support and uplift the sanctity of each life, no matter the disability.

Three Cheers for the Kindle Fire HD!

The Kindle Fire Experiment

Last Saturday I was bemoaning the fact that I can’t really listen to radio. I mean, I can listen to it, but I can’t really follow the conversation. My word comprehension with lip reading is perhaps 60% with the CI but it drops to around 40% without lipreading. So when you can only hear 4 out of 10 words, listening to the radio is like an aggravating game of Wheel of Fortune.

Noelle suggested that I try plugging in my CI to her Kindle Fire HD. I sighed mentally (and perhaps audibly) because I had already tried connecting a double-sided headphone jack from the CI to my computer, and the sound quality had been terrible. I assumed it would be more of the same. But, on the other hand, I thought it wouldn’t hurt to try connecting the CI to the Kindle, and I reasoned that I might be pleasantly surprised.

Well, I was pleasantly surprised. VERY pleasantly surprised.

First, Noelle had me read and listen to an ebook/audiobook combination via something called WhisperSync. This program syncs the exact text to the exact words on an audiobook read by a human. In other words it wasn’t text-to-speech software, but text-to-audiobook sync. She was able to magnify the text on the Kindle Fire HD so that I was reading four lines per page at the “wide” angle (landscape mode), in reverse video (white text on a back background). The cursor jumped from word to word in sync with the accompanying audiobook.

It was fantastic. I then decided to close my eyes to see if I could understand the audio without cheating, and to my surprise I could understand it very clearly. I’d estimate I understood maybe 75-80% of the text just from the audio alone. I hadn’t experienced anything this good with my CI since I had it turned on in 2003.

I had tried connecting my CI to other devices, but apparently none of them were very good audio quality. The Kindle Fire HD, on the other hand, worked extremely well.

I even tried listening to an ambient music station on Pandora. At some point after I got the CI in 2002 I decided that I liked ambient and synthesizer music (Vangelis, Brian Eno, Kitaro, Tangerine Dream, Peter Gabriel, etc.)

That’s probably because the CI already has a certain degree of synthesized sound, so ambient and synthesizer more naturally (or unnaturally) fits with the synthesized sound of the CI. I often joke that I listen to Borg music (a la ST:NG).

I could tell that I needed to get my mappings upgraded to be able to appreciate the music, but I am certain that once I do get a new mapping that the music clarity will improve substantially. It is quite good as it is.

So Saturday’s experiment was a fantastic success. And now I actually want a Kindle Fire. Everybody else in our house loves it, but I didn’t particularly care about it because I didn’t think it would be all that accessible. But it turned out to be a big accessibility WIN.

So it turns out that I can listen to radio after all, if you count Pandora (and I do). And in case you were wondering, the ebook/audiobook I experimented with via WhisperSync is called “Tolkien’s Ordinary Virtues” by Mark Eddy Smith. As you might have guessed, Tolkien has a rather large influence in the Realm of Calinor.

+Sam (aka The Hobbit)

An Hour In The Life Of A Deaf Blind Man (guest post by the Hobbit)

An Hour In The Life Of A Deafblind Man

I wanted to do something sweet for my wife and stepkids, so I decided that I would get my wife a dozen yellow roses, and a couple of packs of candy valentine hearts for the kids.

I walk to the store, and on the way I realize that I don’t have a notepad and a magic marker with me, but I hope that it won’t be a problem.

I went to the bank near the store to withdraw money from the ATM. Unfortunately it is midday, and the sun is shining too brightly on the outdoor ATM for me to be able to use it.

So I go into the grocery store to see if they have an ATM. I ask one of the cashiers where the ATM machine is. He points me in the direction of the bathrooms, so I go over there only to discover there is no ATM. I go back to the cashier and pull out my ATM card and slide it back and forth. He points in a different direction, and I find the ATMs.

I can’t read the fonts on the grocery store ATM very well, so I sort of stab at the buttons until I can see ‘checking’ and enter the amount I want ($20). The machine shows another screen, probably asking me if I want to pay the transfer fee (which I wouldn’t have had to pay if I could see the bank’s ATM machine). I figure it’s 50/50 so I push one. The machine doesn’t give me a $20 and flashes a message that I can’t see.

I sigh with exasperation.

I go to look for the flowers anyway, figuring that I can use the ATMs at the cash register, which is kind of a pain because I can never read the LCD readouts that ask me if I want to use credit/debit do-you-want-cash-back, please-enter-your-pin, and the order isn’t always the same from store to store and I haven’t tried it here yet.

I find a dozen yellow roses and ask the cashier how much they are. She scans it, but I am unable to see what the price showing on the monitor is, so I ask her to tell me. She tells me, but I can’t hear her, so I tell her that I am both visually and hearing impaired, so can she write it down? She does, but it’s in pen, so I still can’t see it. At this point I feel like a terrible nuisance.

I am not completely sure exactly what my balance in my checking is, so I go *back* to the bank, only this time instead of using the bank’s ATM (because the sunlight is still glaring on it too much to see) I go inside the bank and wait in line. Once I get a bank teller, I ask her if she will tell me what my balance is, and I tell her that since I can’t hear, would she please write it down for me.

She writes it down in pen, but it is too small, so I apologetically ask her to write it larger so I can see. She writes it out, and I see that I actually did have enough in my checking account to be able to use the bank’s ATM as well as the grocery store’s ATM. I get enough money to buy flowers, and I head back to the store.

After I get the flowers, I remembered that I wanted to get the candy hearts for the kids. So I ask the cashier which aisle the candy hearts are on. She calls to someone else, who tells her, then she tells me, but I can’t hear her. So I ask her if she will show me with her fingers what aisle they are on, and she holds up a 1 on one hand, and a 3 on the other hand. I figure it’s aisle 13 (rather than 31) so I say “13, right?” She nods, and I thank her.

I go to look for the candy hearts, squinting hard at the aisle numbers, and after a few minutes of squinting at candy boxes, I find them. I can’t see the price for the candy hearts. Since I only have approximately $2 left, I grab two boxes hoping that I have enough money to cover it.

I go to another register to buy the candy hearts, but I wanted to be sure I had enough so I ask the lady if $2 will cover it. She says something, but doesn’t nod or shake her head, so I am unsure. She seems to be asking me for change, so I fish in my pocket for change and show her what I have, and ask her again “is that enough?” she hands me back a dollar and rings it up. Apparently I had given her too much, not too little, but I just couldn’t hear what she was saying.

Finally, I leave the store, flowers and candy in hand, and I decide I should probably call my wife to let her know why it is taking me so long. I can’t see the numbers on the phone very well, but I’ve dialed the number enough to be pretty sure that I am dialing the correct number. I wait until the screen changes so I can begin to talk, but I can’t hear whether my wife is on the phone or not. I speak into the phone telling her “I don’t know if you are getting this or not, but if you are I am on my way home now.”

Then I walk home, and give the flowers to my wife. I am grateful that I managed to bumble my way through it, and I can literally feel all of the tension from the pent-up deafblindie frustrations melt away as she hugs me.

— by Sam

This is why I never lack for short story ideas…

Him: Well, I’m ready. I’m gonna go and show off my sexy new hairstyle. 😛
Me: ok, remember that your wife loves you as you fend off all the girls throwing themselves at you
Him: I will. It will be difficult, but I will be true. 😀
Him: Teasing. Nobody pays any attention to me outside of class.
Him: I’m not really one of them. I might as well wear a sign that says NOT A NARC

Me: lol
Him: 21 Jump The Shark Street
Me: i doubt anyone thinks the blind man is the narc…
Him: heh 🙂
Me: but it would make a hilarious story
Him: yeah

Blinded by the light

Him: speaking of which, I tried to use that other flashlight, but you took it back. so I need a decent flashlight like that one. Like the other one you gave me
Me:  Well … it is my flashlight.  I don’t remember giving you a flashlight at all.
Him: yes, well
Me:I didn’t know you needed one
Him: yeah I have asked a few times for one like the other one I have. I can just use that one and not bother trying to remember to take it in my bag.
Me: I didn’t know you had one.  But I will get you another one soon
Him: k
Me: It’s just that I don’t normally go to the store, pass by the flashlights and think “Oh yeah! The blind man needs a flashlight! You know… so he can see in the dark… or something…” But I’ll put it on my shopping list 😛

Define Normal

The Hobbit and I went to go see the Hobbit movie in matching Hobbit T-Shirts at the Memorial City Mall in Houston on New Years Day.

When my Hobbit is using his cane, people get out of the way, which is kinda nice–by that, I mean it shows that people are still considerate when they understand the situation.  Someone (who wasn’t handicapped) was sitting in the handicapped seats right in the middle of the theater.  They got up when they saw us coming and moved into the normal seating.  I thought that was nice.

The trailers started, and since my Hobbit isn’t fully blind, but remembering he is fully deaf without his cochlear implant, he can sometimes read and understand the huge words that stream on the screen.  We were watching a Mini Cooper commercial:  – the end of this commercial says “Who wants to be normal?” – my Hobbit read that and said out loud: Me!

For me it was a moment of clarity.  I know that my Hobbit really hates when people admire him for his ability to endure his disabilities.  He thinks somehow they are feeling pity for him, instead of actually admiring his skills, albeit skills that are not ‘normal’ for most of us.  That is where the clarity came:  One man’s normal is another man’s extraordinary.

I love my Hobbit (obviously).  My life has been ‘not normal’ for several years now and I think it has improved vastly because of it.  I have learned a new language, my writing has improved, my adventures are almost daily, and I have a kingdom of my own filled with magic windows, Hobbits (at least one of my own), bogs of Eternal Stench (the kids room), and so much more.

I’m glad for not being normal.

But… then again… I’ve never thought of myself as normal.  Have you?