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.

Seeing eye wife searching for new career

I still am not me. I have not found my new normal. I am pretty good now but I can’t seem to find a routine or do the things that used to give me joy or even a sense of accomplishment or meaning. Nothing tastes the same, not even chocolate. I really want to get back to being me, but I don’t think it is going to happen. I don’t think I know who me is without Sam here. I don’t know that person yet, and its kind frustrating and depressing that I actually have to do it. I still get choked up when I have to talk about him as if he weren’t here, but you know what’s kinda ironic? I used to have to remind myself not to talk about him when he was right there unless I included him somehow in the communication because I didn’t think it was respectful. Sometimes I slipped up and talked about him as if he were not there, or just taking advantage of the fact he couldn’t hear and teased people about it. I don’t actually regret that. Maybe I should, but Idon’t. There isn’t anything I actually regret about my time with Sam except I wish I would have given him more hugs and I am pretty convinced I would think that even if I had given him more hugs. But I am without a job, so to speak. I feel like I am missing limbs. It is not the proper function of a Noelle to be without a Sam… what does a seeing eye wife do when her husband doesn’t need her eyes and ears anymore? I don’t know yet…

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

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.

Motivational speakers…

I can’t convince my husband, who is blind and deaf, that he COULD be a motivational speaker, and he has great experiences to share… Everyone always asks about ‘how did you meet’ and ‘how do you cope’ and on and on.  Why he’s not writing or speaking, I really can’t understand. He says he doesn’t like being an ‘inspiration’ to people, but heck!  We need money and he needs a career.  There’s one built into being an ‘inspiration’ to people, isn’t there?  It’s like a writer, but with a sob story everyone actually WANTS to hear.  Or at least be a comedian… right?

So… how do I convince him?

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!!!