lights

Lights were a big theme in my marriage to Sam. Yesterday I took the lights in our room down. It made me emotional and moody the entire day. I tried to explain why to a friend, but Sam said it better:

MagicDoor

Is this not a reason for tears if I shed them? Whether for joy, grief or just pure emotion, the tears are there because the memory is beautiful.

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.

Conversations With The Hobbit: Part 1

My Hobbit: i just wonder if there’s more ‘science’ than we think in scripture
Me: well, I’m pretty sure that scriptures/prophets weren’t all that concerned with science. That’s like asking an astronomer what he thinks about rotating crops: you know? It’s really not fair to expect them to be an expert in both fields, especially when that option really wasn’t available to them. They knew about sheep. They could tell you how to breed a good ewe. That’s about all the science they knew, but for their time, that was pretty damned important and yet, people always expect prophets to know more about science than scientists know about faith (or sheep).

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!!!

Random Acts of Blindness #4

I saw some of my foundation in the toilet the other day, and I thought WTH?  I didn’t really think more about it, until I saw it had been squirted on the wall too.  Two pumps.  When my husband asked me where the air freshener was (I had thrown the others out because they were empty), it all started to come together.  He got the first thing on “my” side of the bathroom that had a pump & thought my foundation was perfume!  He had sprayed it in the bathroom to freshen it up.

I have since put a bottle of orange blossom air freshener (homemade)  and some almond oil air freshener in the bathroom so my foundation, and anything else on my side of the sink with a pump, is safe.

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)

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