Letters to My Hobbit 16

Sam,

Today might have been the worst day I’ve ever experienced since your death a few months ago.  So what happened is the bank wants to reclaim your last SSDI checks that were deposited erroneously.  They want this money redeposited because the Government says he died. But guess what? The bank won’t deal with me at all until I can prove that you died. So the government will get that money from the bank because the bank believes your dead, but they won’t believe your dead for me unless I bring the death cert which I STILL DON”T HAVE BECAUSE CARNES FUNERAL HOME IS A ROYAL *&$#UP house. But that’s what happens when you have to deal with a county program. You get $#*!!y service and you have to be glad for it. It isn’t that I don’t want to pay them back. I was prepared to, but I can’t do it when they want it, in FIVE DAYS. And it’s brought up all these memories about you dying, dealing with the funeral home that never ever went well, ordering a DEATH CERTIFICATE that never came, and just everything that has to do with you DYING. I cried about an hour at work. Got paid 20.00 to do it though… so I guess there’s that. I cried off and on having to take calls, thinking about how this entire thing SUCKS and how nothing about this has gone right, though I still feel blessed to have spent the last 7 months of your life with you almost 24/7. I say “I love you” much more now than I ever did when you was alive, and I told you “I love you” a lot when you were alive. I guess I do love you even more now, I hope you love me more too, but this sucks. I really just want to feel like I can emotionally handle these things, and I just can’t. I want to get to that place where these things don’t make me cry all day and for an hour straight at work. I don’t want to forget you, I just want to get to a place where it’s okay to be frustrated without feeling like I’m being pushed under water again. You grok?

And… I dropped my phone in the toilet and it stopped working so I had to get an AT&T paygo phone because it’s a holiday weekend and I wouldn’t have got a new phone by MOnday.  I’m not sure the deductible is worth it anyway.  125 for that Nokia Lumina 925, which I don’t even really like anyway…  I might just get something else for the same money.

Anyway… After all of that I went to counseling and cried some more.  I think I’ve spent most of the day crying.  I will probably have a massive headache tomorrow.

I bought chocolate.

I love you.

Noelle

Letters to my Hobbit – 13

Dear Sam,

I want to make it clear, first, that I am not “miserable.” I am just not happy.  Everyone has their advice on how I can be happier, including faking it, which I do and have done very, very well.  I even feel it most of the time when I’m with other people.  It’s just those little moments I get choked up, or when I have time to actually think, or when I see your picture, or when something reminds me of you, and most of the time, I don’t even know when or where that will happen–it’s then I cry and cry and cry and cry.  No one’s advice has helped except one person I never really expected to be a help to me through this.  There are others who offer no advice at all, they are just there and supportive, and those are people I hadn’t expected either.  They are all people I met through the internet.  I’ve met them in person, but only once, so I get really defensive when people talk about how bad the internet is for relationships. First, I met you through the internet–and I will never, ever say that was a bad thing, even if it caused me the most emotional pain I have ever experienced in my life.  And these other people I met through the internet, I wouldn’t want to be deprived of them just because they are not people I see IRL every day.

I think maybe I’m crying because Erin isn’t here, and she doesn’t have to see it.  Maybe I feel a little more free to cry without the kids here, but it still makes me feel broken and unhappy.  Maybe I am broken.  I’m not quite sure, and I’m not sure it actually matters.

I had been writing our biography, but I got to a place where I just can’t write it anymore.  It just hurts too much right now.

I have your ashes beside me.  I don’t know if I can put them in the containers they are supposed to go in to give to your brothers/sister and the special container I got for you. I have asked someone to do it for me, but I don’t know if they will yet.

I’m calling someone about counseling tomorrow.  I’m also going to take a day, maybe two, off because I just am so deeply, emotionally exhausted and I don’t think I can sleep well without sleeping pills and I don’t think I can stay awake tomorrow if I take them.  If I can pull myself together tomorrow, I will go back on Tuesday.  I will talk to the lawyer and try to do the things I can’t do while I’m working.

Heavenly Father did clear the way for making this as ‘easy’ as possible on me, I know, and I can see all the little ways he’s done it, but it’s still not easy.  I don’t think I’ve cried this much since that first week you actually passed.  Maybe it’s hormones, mayve it’s your ashes, maybe it’s the weekend, maybe it’s the kids not being here, or a combination of all those things.  Maybe I just really miss you and still love you so incredibly that I don’t want to think about 20 or 30 years without you.

I’ve decided I will work on the fantasy allegory of our life, the one we’d been making up as we went along “The Book of Calinor.”  I’ll take it seriously and try to make it reflect us and our life, and maybe even our future.  I don’t know yet.

I love you.

I wish there weren’t a veil between our worlds, though I suppose it would take all the faith out of being here.

Goodnight, sweetie.

Noelle

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).

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.

 

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)