I promise…

I found a copy of Sam’s vows to me when I was going through my manuscripts for Mars.  I don’t believe it was a coincidence.  I believe his hand was in that.  Here are his vows:

I, Sam, want you, Noelle
To be my wife,
To have and to hold
From this day forward;
For better or for worse,
For richer or for poorer,
In sickness and in health,
To love and to cherish,
Never to part.

I promise to be faithful to you,
To be with you through the good and bad,
To support you in any way I can,
To live for you or die for you.

Finally, I promise to remember
That God brought us together,
And that I am accountable to Him
To be the best husband and father I can be.

In return, I edited the dedication page for my book to be published soon (see the video for it at: https://www.kickstarter.com/projects/skyrocket/martian-goods-and-other-stories )

For Sam

 

You promised to live and die for me,

and here is my vow to you:

I promise that while I live, you will live on

in stories, in tales, as:

Sir Random Loud Noise

aka slyfoot

My hobbit

Patriarch of Calinor

and every hero I create or tell of.

 

You will always be the best man I have ever known.

I love you.

The Sam Touch

My husband, Sam Campbell III, was deaf and legally blind (as you probably know).  Throughout our marriage there were many, many, MANY things that he missed, that he misunderstood, that he wrongly perceived, due to his disabilities.  Sometimes he didn’t know I was crying, even if I was standing there face to face with him.  Sometimes I cleaned up after a mess he made, but didn’t see.  I cleaned about a million broken glasses–so many we started buying paper cups.  Sometimes I cleared something out of his path that he would have tripped on.  I led him.  I interpreted for him.  I drove him.  I tried to get him to only wash one load in the washing machine… Sometimes I guided him here or there with just lights I put up in the hall.

Personally, I may have envied that he got to be home to raise the kids instead of me.  I still have always wanted to be a stay at home mom, but I didn’t envy the deaf/blindness and all the emotional burden that brings.  I may have resented his disabilities as much as he did at times, but I tried hard to serve him without complaining, because I love him so very much and serving him made me all that much more a part of his life, his world, and I really thought if everyone knew him as well as I did, they would love him just as much.

Sometimes Sam was gruff.  He could be downright scary when he was angry and sometimes he had a hair trigger. Often he was grumpy-who could blame him?  Every day was a struggle – and he didn’t see all the people stepping out of the way for him, moving things so he wouldn’t trip on them, and all the other millions of little acts of kindness that actually made his life easier than it would have been without it, but I did.  I saw.  I also learned to look past the grumpiness and focus on the selfless acts that my husband did for me, made even more selfless because he had every justification for needing more attention than I did.  I saw what he did.  I never thought of myself as selfless as he was, but I did my service for him in different ways, mostly physical and financial. He was always the spiritual leader of the house, even when he thought I was more spiritual, that I was closer to God than he was.  He was always the one to get us back to the temple and never complained even a little bit about going to church. — It is very hard to find excuses to miss church when a deaf blind man doesn’t give quite reasonable excuses (like “I don’t understand anything that’s going on there”) not to go, but actually goes out of his way to attend.

I think I learned something valuable about our relationship NOW from our relationship BEFORE he died.

I knew what his struggles were.  I saw them, I heard about them, I even had to counsel with him on some of them.  So those selfless acts, even if I didn’t personally witness them, done on my (or the family’s) behalf were all the more beautiful.  This is actually how I recognize what he is still doing for me now.  I learned to recognize them when he was still here.  Call them “Sam’s Touch.”  I recognize it now because it feels like Sam.  I remember how it felt when he served me before, and it’s that same feeling now.  Its how I think you can recognize what others (beyond the veil, and even here) are doing for you.  

I think this is why the church counsels you to keep a journal.  If you can’t remember how someone influences you, how they make you feel, go back and read it, and then you will know when they are influencing you still.  You will feel it.  You will recognize them because you know them so well.

The ironic thing about our marriage is now I am the deaf and blind one, and I can’t see what he is doing for me, but I know he’s there.  I feel him moving things out of the way for me, putting up lights for me, like I did for him, and I am comforted and reassured that our marriage is still strong.  Perhaps it is fitting for him to see and be as frustrated serving the deaf/blind as it was for me, but maybe it makes him love me and to be with me as much as serving him made me love him (and to be with him).

I do think so.  I think so because I can still feel him.  I recognize his touch.  And that’s why I don’t cry as much or as often.  I’m not ‘remarkably’ recovered, no, I’ve just become deaf and blind and am mostly ignorant of the things being done for my behalf by others beyond the veil.  I see the results, though–I am able to navigate life much more easily than I have any right to expect, and so I thank these angels, my Father in Heaven, and Sam–my hobbit, for lighting my way on the road that goes ever on and on.

My Beloved Hobbit

I went to counseling on Friday.  It was good to have a place to cry and work out who I am without my Hobbit.  I haven’t been able to finish the autobiography that I have been working on, and I have felt a sense of loss at not even knowing about Sam’s childhood.  There is no one living who knows about Sam’s infancy or toddlerhood. He wasn’t adopted until he was six. But all the pictures that his biological grandmother gave him are in a book and I am using them to make him a scrapbook, because I am trying to fill those memory holes that not only I have no idea about, but Sam himself didn’t know about.  I will try to make a book, like I’ve made for most of my kids, so they can remember Sam and experience his life–the life we didn’t get to find out about with him, the past that we didn’t get to talk about with him because we didn’t have enough time.  I felt like this would help me somehow, help me fill up that hole that exists because there just wasn’t enough time to know all of Sam’s stories.

This is the first page:

heavensent

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.

Regarding Hobbits…

My hobbit was recently in the hospital.  That’s why no updates for so long.  He had pancreatitus and was in for an entire week.  I also started a new, well paying,  job downtown.  Taking the bus everyday, I didn’t have a car to rush home and help him, so he called an ambulance.  It’s a short, muddled, painful story about how to cope with disabilities and still manage a relatively stable home life where everyone feels safe–that help will come in time.

The hobbit is feeling better, but there do appear to be some after effects, and maybe some side effects.  We are continuing to follow up with the doctor.

We are looking into a service dog for the blind as well.  I just wanted to give you an update and let you know that we’re fine.  We’re all fine here.  How are you?

If you’d prefer something about a dwarf, check out my latest post on my personal blog.

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.

Cats and Deaf Men

Discovery of the day: Squirt bottles work great on cats and deaf men.

When I’m outside and I need help, it’s not just a simple matter of waving in my window to get my husband’s attention.  With his RP/Ushers Syndrome, he can’t see me, and since he’s deaf, he can’t hear me.  I had a squirt bottle on my window (which was open) for my orchids, which I decided to try in a stream to get my Hobbit’s attention to come out and help me finish cleaning up the pool pump.  I gave him a little squirt (it barely reached him) and he came outside to help me!  It works!

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 😉

The Problem With Pain

I have fibromyalgia, so I know a little bit about how pain can drain you. The pain I had from fibro had never really been intense, but just a constant draining ache. I thought that was bad, but it never induced me to take a lot of pain killers and seemed easy enough to just bear it, because my fibro seems to go through ‘phases’ and will diminish in pain depending on where it is in the cycle.

Recently I have had a toothache that has progressed to a headache/earache, but being a weekend, there was no appointments to be had, so I had to just endure it. I have taken Advil, aspirin, garlic, antihistamines, anything to reduce the inflammation, but the pain is still there and intense. It’s really only been two days, but it has been so intense that it drives me to distraction. The one thing I have gained from this experience is a deeper understanding of people suffering from chronic pain. I can’t imagine being constantly in intense pain. Two days and I’m already thinking I would drive to 8 hours Mexico just to buy something to give me a little relief. I think I understand why people get addicted to pain killers, not just because of the chemical addiction of many of them, but just the desire to end the pain.

I imagine that emotional pain (and the self medication that follows with that) has a similar problem.  When you just want to FEEL good, a bar of chocolate is a good temporary solution.  When you just want to feel NOTHING, alcohol or drugs does the job for a time.  But just like pain killers, the after effects (my father suffered kidney failure from an over prescription of pain killers) are often worse than the original problem.

All that being said–I can’t wait for Monday, for a doctor to prescribe me some pain killers (and antibiotics).

 

PS, I want to thank all of you who have helped with our CI upgrade fund at GoFundMe.  My Hobbit and I seem to survive every month since I left my job to deal with the rapid onset of the Hobbit’s blindness through a series of small miracles that usually come in the form of a human being like you.  Thank you for being our miracle.