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.

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.

Grumbles

I don’t think you can appreciate how obvious Sam’s feelings were because he not only would grumble, not knowing who was around or in ear shot, but he would type out his grumbles when he was at the computer and just not hit enter. It didn’t matter, however, because his screen was so huge everyone in the room could read it. I had to force myself to not read or to try to pretend as if I hadn’t seen. Sam and his thoughts were literally public almost always. He was always really interested in truth and honesty, but he knew that it was important to not take everything people said at face value.  Sam was a scary guy sometimes.  He had that wandering eye that wasn’t quite able to focus on you when he looked at you, besides him being blind.  Being deaf just made it harder because he would grumble so much louder than he realized.  Everyone knew what he thought.  It was hard then at first to accept him at his word when he said things that did not agree with his grumbles. It became easier because his actions were so clear that they started to speak louder than his grumbles.  In the end, it was clear that what goes on inside our heads, those negative thoughts, all came out with Sam.  That was only clear because Sam’s actions: the little gifts of donuts for the kids, candies, flowers for me, going to church with us, going to scouts and young women-sitting in the foyer just to be with us, just for us to be family (as normal as we could be), being cheerful even when he was so tired of his disabilities… All those actions and many more made Sam’s Grumbles something we just ignored as an external version of what normally happens inside.  We still love him for all the little things he used to do for us.  Now we try to do things we think he would have volunteered for: Feeding families in need, working at the church, helping friends that helped us.

Letters To My Hobbit – 12

Sam,

I cry almost every day.  I want to stop crying and at the same time, I’m afraid that I will stop crying.  Does that make sense?

There is more to say, but it all sounds selfish and childish upon examination, so I’ll let it go.

I miss you.

Maybe if I was a better woman, maybe if I were more Christlike, I would be close enough to the veil to feel you.  But even great prophets mourned with sackcloth and ashes.  I am not better than they.

I do wish the veil were thinner…

Love

Noelle

Houston, We have Liftoff!

Sam got his new CI all put together, programmed and processed!

1604772_10153677363630072_1867140_n

I wanted to make sure he didn’t think this was going to solve all communication problems, so I told him very seriously:  “We’re always gonna have communication problems because… you’re a man.”

It never hurts to be honest about important things like this 😉

Ghosts of Christmas past. (Guest Post by My Hobbit)

I will always remember this year’s Christmas. Thanks to the generosity of friends, family, and strangers, we had a better Christmas than I had any reason to expect. We were able to raise enough money through donations for the 20% co-pay coverage for a Nucleus 6 cochlear implant. It arrived on Christmas Eve. It came by FedEx, though I like to pretend it was delivered by sleigh and reindeer.

What’s more, I was able to get another pair of good quality sunglasses thanks to friends in our ward who got us gift cards for Christmas. They are Veza sunglasses, which are only sold at Sam’s Club. I really like the Veza sunglasses because they are incredibly strong and sturdy. Whenever I can scrounge up the money I look forward to adding another pair to my collection. I have three pairs now, and if I don’t lose any of them they should last a lifetime. They’re not a well-known brand, but that just makes them even more special. I feel like I know a secret that most people don’t know.

I don’t want much in the way of luxuries. I like sturdy boots, sturdy sunglasses, and a computer with a fast internet connection. I care more about whether something is durable than whether it is fashionable.

Anyway, what with a new CI processor and new sunglasses, it was a very deafblindie sort of Christmas. I’ve already set up an appointment with a specialist to have the CI assembled and mapped for the first time.

I look forward to switching from the big processor to a BTE (behind-the-ear) unit. It will be a lot more convenient. And fortunately I also have a backup CI that still works, even though it is obsolete. I am practically OCD about having backups: backup CIs, backup sunglasses, backup computers, backup boots, etc.

Anyway, it was a great Christmas. And thanks to everyone who contributed to the purchase of a new CI!

Happy Holidays,
+Sam

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.

Life in Color With Closed Captions

“How do you do it?”

There is a unusual level of dysfunction that my family lives with on a daily basis.  We all realize that this is not ‘normal’ for most people, not even most blind or deaf people and their family.  For us it has become ‘normal’ even if it is not comfortable.  The children are well adjusted to it, still able to communicate with their friends while communicating with their step-father in the best ways to be understood.  There are still miscommunications.  There are still problems that can’t be fixed with a light rope in the hall, clean hallways and regular oil changes.  Some things are still unbearably difficult, but somehow, we make it through.

Family and friends have been an invaluable resource as have charity, welfare and church.  They are all a regular part of our ‘normal’ life.  They all lift us up when we feel we are drowning.  And we try to be a blessing to all of them in return by serving and returning support.

It is a hard, long, difficult road, with many moments of sorrow and frustration, but just as many miracles and sufficient moments of joy.  Sometimes the joy seems fleeting and as hard as we try to hold onto it, it slips like sand through our fingers and we hit the next obstacle.  We struggle, and we endure.

Here is where we share the moments of joy, so we can look back and giggle, smile and remember.  There are many more moments of frustration ahead.  Sometimes we feel overwhelmed by it, and then a friend appears and we are, as CS Lewis said: Interrupted by Joy.  Thank you for being a part of it.

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.