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.

Hobbit Fables #1

My husband and I were talking about the kids and their incessant whining this morning–mom is so evil! She makes me do dishes!–when the Hobbit came up with this lovely Fable that reflects our lives:

 

A dad had kids who refused to eat end pieces of bread. So he told his kids: “Hey, kids, the end pieces are like rolls. You like rolls, so you shouldn’t have a problem with the end pieces of bread.” So the kids quit eating rolls.

 

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!!!

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.

The Valley Of The Sham – Guest Poem by My Hobbit

The Valley Of The Sham

I saw The Great and Secret Show
Lost in the Valley of the Damned
Got past the shame and saw the Sham
I loved the Demons, I loved the Whores
The Light of God shone through the Doors
Caught in a rabbit Trap I never made
My Soul transmuted beneath the shade
The Fire burns, it burns so well
I never knew your Heaven was my Hell.
+S

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)

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?

Good To See You!… Well… Not Really

My husband and I went shopping this morning for snacks and drinks to give to the ASL Missionaries when they come over and help with a project. We have the LDS Missionaries (specifically the ASL speaking ones) over a lot to help with things that the Hobbit is not able to do because of his vision loss.

So we are at Randalls, just finishing up our shopping trip, getting into the car with our goodies, when someone pulls up alongside us. He waves and I recognize him. I roll down the window and say “Hi!” He waves back and my husband asks who it is, because even though he’s only really a door’s length away from us, my Hobbit can’t see him. I tell my Hobbit that it’s Brother So and So from our Ward (he’s also our Home Teacher) My Hobbit brightens, turns and waves. “Hello!” he says. “We are just buying snacks for the missionaries!” We nod and small talk for a few moments and then it’s time to go so the Hobbit says “It’s good to see you!” and I start pulling away when he says: “Well, not really.”

It’s funny because even though he can’t see him, he’ll still use those idioms. What’s funnier is when we’re at home and I’m talking to him in ASL and he says he can’t hear me…

Ah, the life of a Hobbit.