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.

A look backwards

Here is a post from Sam’s (My Hobbit) blog in 2003 I thought you all would find interesting regarding his CI and how he dealt with Division of Blind Services (and this was how he dealt with many, many people especially before he became fluent again in ASL). I thought you’d find it as interesting as I found it comforting to look back and see what a great thing the CI was for him/us.

Saw my parents yesterday. My mom told me that she had called Shand’s hospital and that they are going to get back to her about the cochlear implant surgery. I’ve already set the ball in motion by going to have the MRI, and I feel like it’s almost out of my hands already. It’s not, I know. I could say, at any time, “NO, I don’t want the implant.” But I haven’t done this yet. What have I got to lose by going through the operation, my mom and other people ask… well money for one. Plus I don’t know if the operation will work or not. It’s a gamble. But my hearing has gotten so bad that I think I’m willing to try this.

At first when you get a cochlear implant, everything sounds funny. The way the audiologist in Gainesville described it, people tend to sound like they have cartoon voices at first. Then once you get adjusted to the new way of hearing, people begin to sound normal again. This takes a few months of trial and error, with adjustments to the speech synthesizer. I don’t in any way see this as some kind of miracle or answer to prayer. I’m sorry, but this is purely a technological hack, and I don’t see anything divine in it at all. But my parents act like this is supposed to be some kind of miraculous gift from heaven. Bullshit. It’s a completely manmade solution to severe deafness. I think I am going to go through with it, but I don’t have any illusions or expectations that there will be some kind of miraculous turnaround in my hearing.

My digital hearing aids drive me almost up the wall sometimes. Unlike the old analog hearing aids, whenever the battery gets low on these they start to beep in high pitched frequencies. I tell people that it sounds like R2-D2 on crack. Heh heh! But I should be (and am) grateful for these hearing aids, since they were provided for by Division of Blind Services. Sometimes I feel a little guilty for accepting assistance from the state, but I shouldn’t. I worked for plenty of years, and paid plenty of tax dollars, so I accept whatever assistance I can get with gratitude.

I went to see Sue at DBS yesterday. We talked about the possibility of supported employment. Sue and I have a unique way of talking… I talk to her, and she types in Microsoft Word at 72 point font so I can read what she’s saying. Neat arrangement. I told her I think I want to wait until after I get the cochlear implant before deciding to jump back into the workforce again. I live on Social Security right now, and I’m able to take care of myself pretty well. I’m lucky to be living where I am. The rent is only $300 per month, plus $150 for food. So that’s only $450 + the telephone and Internet bill which comes out to another $50. So I can pretty much live on about $500 per month. It’s not a luxurious lifestyle, but I’m content for now. I often wonder what I’ll do once I move from this place. I don’t want to think about it, but I suppose I should. I don’t think I’ll be living here forever.

Sly

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.

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.

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.

How are things going?

Friend (who shall remain nameless to protect their identity):  So, how are things?

Me: (shrug) Okay, I guess.

Friend: Has your husband had any more problems… burning down things or anything? (uneasy laugh, but obviously sincere in their concern for him)

Me: No more fires. Just flooded the washroom.

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!!!