Category Archives: Adjustment to blindness

Carnival Post – Top Ten

Here is the complete Carnival!

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It’s the tenth Assistance Dog Blog Carnival! Click here to read about what the blog carnival is and click here to read about this round and it’s topic. The ADBC has come full circle in this round, being hosted by the original host, After Gadget.

I have had the ultimate writer’s block but really wanted to submit since I submitted in the first round. I’m just going to write and not try to be organized haha! The topic for this post is “Perfect Ten”. I wracked my brains trying to come up with an idea but my inner creative chick is still sleeping apparently so I’m just going to jump in to some free form and see what comes out. Sometimes writing about Jayden is like trying to express gratitude. I tend to get very flustered when my heart is so full.

Jayden isn’t perfect and nor am I but I always say our match was perfect. Guide Dogs for the Blind was perfect in matching Jayden to me. I can’t imagine anything that is lacking from our partnership. When GDB asked me what I wanted in a dog I had no idea since I grew up with cats. I told them I just needed a chill dog who would be ok when my MS flared up and I needed to rest. I think GDB gave me the most chill dog available haha! He is cool with whatever I need. He loves to relax on the couch with me but when I need him to work he snaps to attention like a soldier. He has gotten so in tune with me that he knows exactly what I need, sometimes before I do. He’ll slow down on walks when he knows I’m tiring. Sometimes I try to speed him up and he disobeys and then I feel my fatigue. He knows before I do; it’s pretty crazy! He really was the perfect match in so many ways. I’m amazed at these schools and how well they do in the matching process.

I never imagined all the added bonuses (non guide work stuff) that would come with a guide dog. Let’s see if I can come up with ten added bonuses:

Good Potassium Numbers

When I was in the hospital when I went blind, my potassium was dangerously low. They gave me a pill and after I saw my doctor upon my release, she ordered a banana a day. That didn’t work out so well because I couldn’t make bananas last long enough; they went bad so quickly. After I got Jayden, I remember his raiser telling me Jay loved bananas. Now my potassium stays in good shape thanks to bananas and orange juice. How could anyone not want to share a banana with a dog who goes crazy when he hears the question, “do you want a banana?” (That link has audio) Oh and orange juice taste even better when it’s a banana chaser!

Tear Soaker Upper

I should have known what a comfort Jayden would be when I’m sad. Heck even my cats have soaked up tears over the years but they don’t hold still like Jayden does. Since Jayden and I have that incredibly strong bond of assistance dog and handler, he knows when I need him to just lay still and let me cry on him. It’s a good thing tears don’t hurt his coat haha!

A Schedule A Dog Makes

One of the hardest parts about going blind and being medically retired was the sudden loss of a schedule. Weekends were no longer anything special since every day was like a weekend. Working folk think this would all be a dream come true but when you’re twenty-nine and suddenly can’t be self supporting, it’s a huge loss of identity. It’s amazing what a schedule will do to add a sense of purpose, at least it did for me. Jayden is on a feeding and relieving schedule very similar to what he had at guide dog school. Working my life around his schedule led me to realize how great schedules can be for adding structure to my otherwise structureless life. I’ve since come up with workout and cleaning schedules that turn my week into a “work week” and allow me to enjoy weekends with B. Amazing how a pee schedule for my guide dog turned my day-to-day life into something more “normal”.

Fitness Lives

When I decided to get a guide dog I knew I’d have to do some work to build up my stamina. I needed to be able to walk a mile since I’m pretty sure that was one of the requirements for acceptance to GDB. Luckily the blind center has a gym and a health and wellness program and my name came up on the waiting list at the same time I decided to apply to GDB. Serendipity? My whole life I’ve wanted to be fit and healthy but it’s hard without guidance and I was never successful. I reached my goal of being prepared for guide dog school but I never stopped with the fitness. It has since become something of an addiction for me and since I no longer can work out at the blind center, I’ve developed a program for myself at home. I’m more fit that I’ve ever been and exercise has been the best form of treatment for the MS. This might be the most important added bonus!

Ex-Smoker

Ok this is easily a tie with the fitness as one of the best added bonuses. Anyone who smokes or used to smoke knows how hard it is to quit. For me it was easier to quit drinking than it was to quit smoking. Jayden became another motivation however, when I thought about what would happen to him if I wasn’t around. I also hated exposing him to that and I’ve now been quit over a year.

Someone To Watch Over

I’ve never wanted children. Ever since I was a teenager I didn’t want children. It’s almost as if something prepared me for my future. It’s not that I can’t have kids now,I’m fully capable, but I wouldn’t have the energy. The MS is definitely my primary disability, not the blindness. However as a woman, it’s in my nature to want to care for something. I worked in therapy about the choice not to have children because even though for years I told myself I didn’t want them, there was still this huge sense of loss when I realized I would never carry a child and rase an adult. Jayden has filled a huge part of that void and that is something I certainly never expected. I knew going into this partnership that Jayden would look to me to fill his needs but I never expected the fulfillment I get out of being that person for him! I take pride when the vet tells me how good his teeth look or when a fellow dog lover tells me how great he looks. Yes, he was raised by another before he came to me, but I’ve continued to mold and shape him and care for him and I think of him as my child. I think most animal owners think of their pets as their kids, I know I always did with my cats, but this goes so much deeper. I never expected my guide dog to fill most of the void left by the child I’ll never have.

Fear Management

The first summer after I went blind we had an insane monsoon season and during one particularly bad storm, I asked B to go into the spare room and get the cat out of there. I can’t remember why I wanted her out. B went to go get her and then I heard shattering glass and the door slam and I started screaming, not sure where B was. The wind had been howling and whistling, sounds I had never heard before. B was ok, he had just come out of the room when the wind blew the window in and caused the door to slam. After that I was terrified of wind. I was afraid I would transfer this fear to my dog so I asked at school what to do about that. I was told to just try and be as cool as possible and make storms fun for my dog. I never imagined how this would cure me of my fear! Now the wind has to be really bad to scare me but I don’t panic like I used to. I just calmly take Jayden with me to a safe spot in the house and “cuddle”. I feel safer and he doesn’t get freaked out. I love this added bonus! That fear of wind was getting debilitating before Jayden came around.

Ultimate Feet Warmer

As I’ve been writing this off and on over the last few hours, Jayden has been in several positions on the couch next to me. While I was writing the last bit, he got off the couch and lay down on my feet. It’s almost like he was saying, “don’t forget to include how much you love it when I lay on your feet!” There is just something so comforting about the weight of him on my feet and nothing is better at warming them! I love it when he does this. The only negative about when your dog is comfortable with some part of him resting on you is that you don’t want to disturb him and therefore don’t move. I’m pretty sure my feet are going to fall asleep haha!

Attitude Adjustment

It’s really hard to stay in a bad mood when you have a goober head constantly cheering you up. I might be feeling depressed and then it’s time for Jayden’s afternoon Kong Wobbler treat. I’ve taken to pronouncing “wobbler” so it sounds very French and you can’t stay in a bad mood when you’re asking your dog if he wants his Wobbler in a high pitched silly French accent. Then when he’s done with it and I ask him to show me and he takes me to where he left it, I get so proud and excited and he gets thrilled to get his reward “cookie”, that I find myself grinning so big my cheeks ache.

Fellowship

When I decided to apply for a guide dog, I told my friend Chupa that I wanted to start a blog to document the process. I jokingly said I could call it Doggy Diaries or something. She said I totally should and my old Blogger blog was born along with the Doggy Diaries category. Before I knew it I was a part of a fellowship of other guide dog handlers and puppy raisers and I felt so apart of the blind community, finally. I felt so alone when I went blind since no one I knew understood what I was going through. There was one woman I spoke with on the phone, a friend of a friend and it was actually her guide dog who was the first guide dog I met. This blog though, led me to the people who helped me feel not so lonely and they came with me on the journey of getting a guide dog. Some of those people are still my closest friends today and I bet some of those people are submitting posts for this very carnival. The fellowship in the guide dog community is certainly one I never in a million years expected when I applied to GDB in September of 2009!

Ok wow, my arms are aching something awful but look, I wrote the post! Haha, and it turned out more organized than I thought it would. I’ll come back and add a link to the complete carnival post when it’s up.

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Filed under accomplishment, Adjustment to blindness, blog carnival, cats, Doggy Diaries, fellowship, GDB, gratitude, guide dogs, intelligent disobedience, Jayden, jayden quirks, misty eyes, monsoons, num num food, puppy raisers, relieving, spoons, therapy, weather, working dog, workouts, youtube

Dear Evan Longoria,

Last night I lay in bed contemplating a writing prompt I recently read inviting me to picture the one person I wished was reading my blog and write him or her a letter. You immediately popped into my mind and last night as I thought about writing such a letter, I found myself in tears.

On April 24, 2008, I went blind very quickly and unexpectedly. I wish I knew the exact date I heard your name for the first time but it must have been nearing the end of the 2008 season. I heard Down and Out, a song I loved, and asked my boyfriend why it was playing. He explained all about you and your amazing rookie season and the Rays and how Joe Maddon had taken you guys out of the cellar and it looked like you might just make the playoffs.

I was not a baseball fan. I wasn’t a sports fan period, unless the Arizona Wildcats were playing. I thought baseball was the most boring game in the world but as I listened to the game on TV, unable to see it, relying on the broadcasters and my boyfriend, I was riveted by you and your team’s story. At the beginning of the season, before I went blind, my boyfriend got the MLB Extra Innings package and I rolled my eyes at the cost. He had said he would pay it don’t worry, unless he caught me in the bedroom with baseball on. Little did we know that would be exactly what he would discover several months later.

When I found out how much better baseball was on the radio and that the playoff games were broadcast locally, that cinched it. My little radio went with me as I listened to you and the Rays make it all the way to the World Series. I cried and cried when it was over.

I wasn’t just sad the baseball season was done. I was saddened to lose this newfound passion I had had so briefly. Evan you gave me something incredible that year and I’ve wanted you to know it ever since. You gave me something to look forward to! You opened up an interest in me that I was able to feed and dive into when I had nothing else to hold on to. I had no access to technology in those first dark months. I had nothing but books on CD that friends brought me. Until I heard Down and Out that day and found out about you.

It wasn’t long before I had a full blown crush, especially after my girl friend described you. I fantasized about meeting you, most of those fantasies not for public consumption. These days when I think about meeting you the scene always ends up with me in tears trying to tell you what you mean to me. You saved my life!

Not only am I now a rabid Rays fan who looks forward to the season every year but I have so many friends in the Twitterverse because of you and the Rays. You were the second person I followed when I joined and now I have a host of friends, fellow Rays fans, who have become family to me. I am never alone, even on my darkest days they are there. You started this Evan, you did. You were just doing your thing, playing your game, being you and you had no idea you were doing this for me, saving some woman’s life clear across the country! Thank you so much. A thank you is nowhere near enough.

You’ll probably never read this but hey, stranger things have happened right? You tweeted me once, after you were bribed, I wonder if you remember that.

I think that’s all I have. I know the chances of you reading this are rare but the thought that maybe someday you’ll know what you mean to me makes me smile. You also have no idea how much sometimes I wish I was Jaime! You know, because she can see. Right sure uh huh that’s it.

Love,

Ro

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Filed under Adjustment to blindness, baseball, evan longoria, gratitude, letters, misty eyes, My story, NaBloPoMo 2012, twitter me this

Let’s talk about God, shall we? Don’t be scared.

I haven’t used a lot of the writing prompts suggested by a Twitter account I’m following but I liked this one and decided to see if I could do it with my one and only iBook. The prompt was to grab the nearest book, turn to page eight-two and work the third full sentence into a post. Since going blind, I can never participate in these sorts of things, grabbing a sentence from a certain page, since that isn’t possible with an audio book. Now however, I have an iBook and the ability to choose my page! I am pretty sure page eighty-two of my iBook isn’t the same as the print book, but it works.

When I found the desired sentence, I was torn about whether to do this. This sentence addresses the major controversy about the program that rescued me from the clutches of alcoholism – God.

When I first stumbled into my first meeting and saw God on the walls in the steps I thought, well I’ll do those steps because I don’t want to drink anymore, but don’t talk to me about God. Of course I knew they would talk to me about a higher power. I had known a guy who had made a band his higher power. Before I had ever started drinking, I hung out at a coffee shop with a bunch of young people who were newly sober and they talked about how they could make their higher power anything they wanted. Yet, it was God on the walls everywhere, not a higher power that was a door knob or a band.

I wanted what those people had though, so I trudged forward and decided to deal with the God thing when I came to it. I wanted to be happy like those other people, those people who didn’t drink and still smiled and laughed, genuinely laughed!

“When we became alcoholics,crushed by a self imposed crisis we could not postpone or evade, we had to fearlessly face the proposition that either God is everything or else he is nothing.”

I have read that sentence countless times this morning as I copied it down from my iBook word by word. Looking back on those early days over seven and a half years later, I see that I had already noticed that God is everything when I looked at those happy people and decided I would do whatever they had done to be like them. I didn’t know it yet, but it was their faith in something, call it whatever you want, that was pouring out and making me drunk with the desire to be happy with them.

The misconception about this program and God on the wall is that when you walk in the door they start throwing bibles at you and making you believe what they believe. That is so far from the truth I laugh when I hear it. You hear comedians talking about it, you see it online in every social networking group there is, it’s everywhere and it’s sad.

The chapter in the book, (yes there’s a book but it’s not a bible, it’s more a manual) this quote comes from is the chapter called “We Agnostics”. The writers of the book understood that in order for their program to save as many lives as possible, they would need to reach out to people of all faiths. All faiths include no faith. That is where the God of your understanding comes in and that’s what saved my life.

I craved having something to believe in. I needed it. I was frightened off of religion as a child though and never found anything I could believe in. I tried as a young adult. I went to supposed “cool churches” but they still preached hate. When I was told I could borrow my sponsor’s God, I was intrigued.

She asked if I believed she believed in her higher power. Well, yes I did. She asked if I wanted what she had, meaning her sobriety and her happiness. yes I did. So she said I could borrow her God. She called it God because that is a universal name and it’s easy to spell. So when I left her house, I pretended her God came with me. I started talking to her God, just asking for help staying sober, simple stuff in the beginning. I cannot describe the relief!

Whether that God was real or not didn’t matter. The point was I was so sick and broken that believing that her God was watching out for me and helping me stay sober brought me relief and took away some of the fear that I would go weak and buy a drink. It didn’t take long for me to morph that comfort into my own conception of my own God.

That faith that helped me stay sober in the beginning has helped me through so much more than I ever thought possible. Whatever it was that I talked to and begged for help when I was diagnosed with MS, kept me from drinking and got me through that adjustment. Whatever it was that I leaned on and relaxed into when I went blind on my three year sobriety anniversary helped me stay sober through a life altering ordeal and helped me through that adjustment. Whatever I sobbed to on my knees in the kitchen with a destroyed coffee maker and water and coffee grounds all over me, kept me from drinking and guided me towards getting help for my mental health.

So in my life, is God everything? You bet. Is my God a religious God? Not for me, but if that’s what you need, fantastic! Is my God always God? No. I don’t pretend to know what God is and sometimes my higher power is just the part of me that is sane, the part of me that knows what the next right thing is and does it, the part of me that knows right from wrong and cares about others. So you see, sometimes my God is me. If that isn’t everything or nothing, I don’t know what is.

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Filed under Adjustment to blindness, apple Inc, faith, fellowship, gratitude, mental health, My story, NaBloPoMo 2012, sobriety, spoons, twitter me this

“Beginner’s Guide to Echolocation for the Blind and Visually Impaired: Learning to See With Your Ears” by Tim Johnson

When I began Orientation and Mobility lessons a few months after going blind, I was amazed to learn that using a white cane involved so much more than just interpreting sensations in the hand holding the cane. My instructor, Dave, taught me to begin paying attention to sounds outside my apartment. Hear that traffic? If you ever get turned around, listen for the traffic and use the sound to point yourself in the direction of your apartment. Years later I would use this skill after arriving home with my guide dog while he was learning the lay of the land.

Dave also taught me how to listen for buildings and hear the difference between a flat building front and an alcove or covered area. I used this a lot while learning my home area since those sounds became landmarks. Instead of the mailbox on the corner letting me know I was close to my destination, the different sound the cane made as I passed by an aluminum overhang became my landmark.

Dave taught me how to tell which lane a car was in as we stood next to a three lane road. He would stand me near a bend in a busy street and have me point to where I thought the intersection was. In buildings and stores he would have me stop and listen for the sounds of a cash register or talking. When I expressed fear of entering a public bathroom alone, he found a blind female coworker who told me to listen for the sounds of the sinks, the hand dryers, the paper towel dispensers, the flushing toilets. Remember those sounds in relation to the door and you’ll be fine.

As I learned all these skills I couldn’t help but remember a television documentary I had watched with B back when I was blind in just one eye. This documentary was about a boy who lost his eyes as a baby. B and I watched in amazement as this boy road his bike, skateboarded, shot basketballs and didn’t miss, all by clicking his tongue. When the program ended I turned to B and said, “I should learn that in case my other eye goes blind.” I clicked my tongue a few times but the thought of losing my other eye never seemed like a reality. Who knew a year later I would begin to learn the basics of echolocation without even knowing it.

When I read “Beginner’s Guide to Echolocation for the Blind and Visually Impaired: Learning to See With Your Ears” by Tim Johnson, I found myself remembering those early days of O & M Lessons with Dave and smiling. While learning to navigate the world without sight was frustrating and terrifying, there were also some really fun times. This book was a refresher for me in many ways but it also introduced new skills and concepts. It can be exhausting moving around the world with your ears. Johnson gives examples of relaxing exercises and techniques to practice to assist with honing your hearing, decipher sounds and open your mind. I think this is invaluable to help with energy conservation. I have found myself focusing on these things in the days since I read this book.

Johnson makes it clear that this book is not a replacement for O & M lessons with a qualified instructor. He also gives information about centers where one can go to specifically learn echolocation. I would love to be able to attend this kind of training! I remember when I was first blind, navigating around my apartment and stopping just before I hit a wall. I remember telling people, “I heard the freaking wall!” I really enjoyed reading this book and finding out in detail just how it worked that day I heard the wall.

Johnson explains sound waves and why certain objects sound the way they do when a click or clap bounces off of them and back to the ears. He explains how the visual cortex in the brains of the blind still function, allowing us to build images in our minds from the things we feel and hear. I ate this information up since I love brain science. When I finished this book I felt brain tired, just like I do when I read books about science. I love it! I also had an aching tongue from all the clicking I did as the book described different techniques. Johnson flawlessly uses descriptions to teach you all the different ways you can click.

I recommend this book for anyone, blind or sighted. Even if you are not interested in learning echolocation, it is still a fascinating read for anyone who enjoys learning something new. “The Beginner’s Guide to Echolocation” is available in print from Amazon with large print available and audio coming soon. You can also download the book in MS Word format to read with your screen reader.

We don’t think about the kinds of echolocation we use every day. Whether using a white cane or a guide dog, if we can hear, we can see our surroundings as we move through the world with our mobility aids. There are even some days I can tell when it’s cloudy, just based on how different the traffic sounds. I don’t know about you, but I am grateful to be able to sharpen all my tools as I continue trudging along on this sightless journey. My thanks to Tim Johnson, for devoting his time and skills to this book!

*Addendum* Exciting news! I heard from Tim Johnson and the audio book is now available for download here, and will soon be available on Amazon, Audible and iTunes!

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Filed under Adjustment to blindness, Amazon, blind opinion, cool product, gratitude, guide dogs, NaBloPoMo 2012, Orientation and Mobility, plugs, white cane

A Letter to Fifty-Three Year-Old Me

Writing the letter to my fourteen year-old self was fun. The writing prompt I took the idea from said to follow it up the next day with a letter to myself in twenty years. I didn’t give it much thought until it was the next day and the thought of the future was too scary. I think today I am ready to do this since two fictional worlds I’ve dived into recently are more scary (hopefully) than twenty years from now will be.

So, fifty-three year old Ro, I hope you are alive to read this. If you are not fifty- three year-old Ro, meaning you are Ro and not fifty-three yet, don’t read this. You can’t read this until November 11, 1032. Oh wow.

Oh and readers, you should leave a comment. If this blog is still here in twenty years, hopefully it is, your comments will be in a time capsule of sorts haha!

Dear fifty-three year-old Ro,

Wow, so did I make it this long? Mom didn’t make it to fifty-three so if I’m reading this in twenty years I better be grateful. Remember how you thought you’d never see thirty because of how crazy your life was and then you literally didn’t see thirty because you went blind at twenty-nine? Yeah, I still think that’s funny today. Do you still find it funny in twenty years? I hope so, because without humor there’s just no point.

Do you need a refresher of what life was like for you at thirty-three? Well, I’ve been with B for just over five and a half years now. Are we still together in twenty years? If we are, what is he like? Did he ever start eating vegetables? I know, that’s probably a really stupid question. My three best friends are Carol, Chupa and Georgie. How are they? Ok I’m misting up thinking about these people in twenty years. Do you remember being convinced that everyone would die before you and you would be left alone in this scary world? That was only like two months ago, before I started Lexapro. Thinking about the people I love the most and how it will be in twenty years is starting to freak me out. It’s a good thing I’m medicated.

What about Erik? He’s my only friend who’s younger than I am. Only by a few months but still. How is he? I hope you are still in touch with him. We’ve been friends so long and there has always been gaps where we lose touch. Although ever since I went blind and started using my Macbook, we haven’t lost touch, so I hope in twenty years we’re still close.

Ok, so speaking of my Mac, what is technology like? Do people have stuff implanted in them yet? I always imagine little nano chips for phones and stuff. I mean seriously, the technology has to be amazing in twenty years! Or is it scary? Has it gotten out of control? It could go that route too. Right now you have an iPhone 4 running iOS 6.0.1. The latest iPhone is the 5. What is the iPhone in twenty years? Do you have an iPhone? Has any other phone ever rivaled the accessibility of the iPhone? I have a Macbook they don’t even make anymore. I was almost completely out of space on it so I started converting videos to mp3. What do you have in twenty years? Do they even make laptops anymore? Do they use wires at all? I can’t imagine there would be wires anymore. Am I right?

What animals do you have? Right now I have Jayden and Timmy and Spinelli and Fi. I can’t think about the future without them.

Are you still blind? Did they figure out how to give you new optic nerves? If so, did you get them? As of right now, I can’t imagine seeing again. I’m so used to things the way they are, so I don’t know if I would try anything to see again. I remember when I first went blind I wanted more than anything to see again, even just a little bit. I was ready to get on a plane and go to the UK where they were experimenting with a cancer drug that helped MS patients regain lost functions. Now though? I couldn’t imagine testing a drug. It’s a scary thought. So what have you done in twenty years?

I’m afraid to think about what the MS has done to me in twenty years. It’s impossible to think about my future self though without wondering about that. I won’t think about that now. Maybe you’re reading this in twenty years and smiling because nothing horrible has happened. Is that too much to ask for?

There really isn’t much more to write. There isn’t much to say to a future self beyond asking questions. I can say I hope you are as happy as I am today. Though I hope you are happier. I’m happy, but I could be happier. I just hope you aren’t less happy. I hope you’re still sober, though obviously when it comes to that I can’t really think beyond today. If you’re sober and still smoke free and at least as happy as I am now, then you’ve got it good.

Oh hey wait, I have to ask, is there equality? Have people finally quit being so damned uptight about gay marriage? Has racism and bigotry finally really gone away? Do women still have freedom over their own bodies? Has the insanity over birth control gone away? Did people start finally focusing on the real problems? God I hope so. If there isn’t more love an acceptance in twenty years, how are you managing?

I’m reading “The Handmaid’s Tale”, do you remember reading that book? It’s incredibly depressing. It’s what could happen if the crusty old white guys don’t stop wanting to control the female body. It’s terrifying. I hope it’s nothing like this in twenty years because if it’s going to go down that path, I hope the Mayans were right. If they were right, you won’t be reading this in twenty years, no one will.

Ok wow, this turned very doom and gloom. I was afraid this would happen when I thought about writing this letter. Writing to fourteen year-old me was fun because I don’t fear the past and because I knew what happened. This letter is nothing but fear of the unknown and my dwindling hope for a happy future.

I guess my only hope is that there’s just more love in the future. There has to be, or the future is grim grim grim.

I should end this on a happy note. Hmmm, happy. So have the Rays won a World Series or five? Ten? How long did Evan Longoria stay? Please tell me he didn’t end up with Boston or New York. What about David Price? Did I ever meet any of them? How are all my online friends? I don’t want to start naming them all because that’s a lot and I’m sure I’d end up leaving someone out.

One last question, what kind of voice are you listening to on your Mac? I can only assume you still use a screen reader and a Mac. Is it still Alex or have they made new voices that are just as good? Knowing Apple, they probably use human speech in twenty years haha. Ok, I just heard my DM ping. I think that’s my cue to wrap this up.

I hope this letter finds you well , my fifty-three year-old self! Oh, happy early birthday!

Love,

Thirty-three year-old Ro

PS – Do they have replicators and/or transporters yet? Did you ever publish anything?

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Filed under accessibility, Adjustment to blindness, Alex, apple Inc, assistive technologies, baseball, cool product, evan longoria, fellowship, Fi, humor as coping skill, I might be a writer, in the news, iPhone, Jayden, letters, mental health, misty eyes, mom, My story, NaBloPoMo 2012, on this date, politics, proud geek, screen reader, silly girl, sobriety, Spinelli, spoons, Timmy, twitter me this

Solo-Dx – The Next Wave of Audio Descriptions

I used to enjoy movies back in the day but since going blind, they have lost their appeal for the most part. When I do take in a movie it’s usually alone when I can get my hands on a described version. For those who don’t know, audio descriptions are sometimes available for the blind and visually impaired. This will be a narrator describing the action on screen when there is no dialogue.

While this is great, it’s not easily accessible since it will be in a DVD or Blueray menu and not available at all for streaming movies. B and I have watched a few movies together when he was renting DVDs. If a movie sounded interesting to me he would check to see if it had descriptions and most times it didn’t. So I only got to do a few movies with him that way and while it was great for me, it was annoying for him because sometimes the narration would describe action before it happened on screen. The narrator can only speak when there is no dialogue so often times something is described right before it happens visually on screen. I’ve completely gotten away from enjoying movies, so imagine my intrigue a few weeks ago when I checked the Roof’s mail and found this from a company in Los Angeles that specializes in audio description, hollywoodaccessservices.com.:

“Located in the heart of the entertainment industry, Hollywood Access Services, LLC produces audio description that is faithful and appropriate to the source material, offering a vivid experience to visually impaired consumers of motion pictures, home entertainment, and television programming. 

Here’s a little bit about our new product: Solo-Dx Solo-Dx is a new premium audio description MP3 file that you can play along with your favorite movie at home. Each Solo-Dx track is written and produced by experienced entertainment industry professionals. Solo-Dx helps bring movies to life for individuals with visual or cognitive impairments.  Solo-Dx works with any standard media player. The only other thing you need is the movie itself on DVD, Blu-ray, streaming, or Video-on-Demand.  Simply follow the directions narrated at the start of the Solo-Dx file, sit back, and enjoy!   You can learn a little more from our website at solo-dx.com.” 

I was able to choose Hunger Games to try this out with and was sent the Solo-Dx track. Time kept passing and I kept not having a good chunk of uninterrupted time to enjoy a movie. It’s amazing how quickly you get out of the habit of setting aside time for movies and television when you no longer enjoy such activities. Finally today I had time so I rented Hunger Games from iTunes. Solo-Dx had sent me the description track and I had that loaded on my iPhone all ready to go.

Wait, back up! I can hear your thoughts. Rented a movie, track on the iPhone, what what? The Solo-Dx track is an mp3 file you download from iTunes or Amazon. Currently the tracks are $1.99 but I was lucky enough to get Hunger Games complimentary. Unfortunately I don’t have a Netflix or other streaming subscription so I needed to rent the movie from iTunes. Lucky I don’t need hi-def so I only had to spend four bucks on the rental. I had never rented a movie before so I wasn’t sure what to expect. Once you download it you have thirty days to watch it. Once you press play, you have twenty-four hours to watch it. I couldn’t get the movie to start right back at the beginning again after I messed up the syncing of the track. I was able to get it all lined up though and we’ll get to that in a minute. I was jus able to start the movie again after completing it so I presume you can watch it as many times as you can in that twenty-four hours.

I put the Solo-Dx track on my iPhone but you can put it on any device. I would think it would be difficult to play both on the computer since you would need to play the Solo-Dx track using a different audio player. On the Mac you could do this with Preview by showing the Solo-Dx track in finder and pressing space to play the file at the appropriate time. So this would be possible without another device.

I had misgivings about doing this with my iPhone since it’s a phone and phones interrupt things. We’ll get to that. You sync the track and the movie by first listening to the track and the directions. Using Hunger Games as an example, the instructions said music would play for about ten seconds and then a distinct guitar would sound. When you hear the guitar, start the Solo-DX track. After it told me that, it counted down to three and there was a beep. You pause the track at the beep and wait for your guitar. When this was explained to me I thought it all sounded rather complicated though it made sense and I figured actually doing it would make it clear and it did.

I was disappointed when I had the track all cued up on my iPhone, paused at the beep, and the darned movie was too quiet and I didn’t hear the beginning music. The guitar started but that too was quiet so I quickly paused the movie and tried to find a way to restart it. I couldn’t find how so I got frustrated and thought how will I ever sync this? I checked the time elapsed and it was thirty seconds. The instructions said there was about ten seconds of music so I restarted the Solo-Dx track and paused and unpaused both track and movie until I got it lined up. I was lucky because the description said something about a girl running down the stairs and I got it lined up perfectly with the sounds of running feet. Lesson learned so I’ll be prepared next time. After finishing the movie I replayed the beginning and got it all synced up perfectly the first time and it was pretty sweet that way! I hadn’t missed anything with my syncing attempts before luckily.

So wait, you put the descriptions track thing on your phone? You didn’t get any phone calls or anything interrupting the description track?

That had been my first huge misgiving about this. I could have used my iPod but I didn’t want to use earbuds and I keep it in my room with my audio books on it. I know, luxury problem. I thought I would just use my phone and my Bluetooth earpiece so I’d have the descriptions in one ear while the movie played on my computer speakers. I ran this by Solo-Dx and it was suggested to either use airplane mode or the new do not disturb feature in iOS 6. Perfect! I would just use airplane mode I decided. Do not disturb would still allow favorites to ring through unless I went and changed settings so airplane mode was just easier. Only problem with that was it also disabled my Bluetooth earpiece so I was back at the ear buds issue. I decided to just use the built in speaker on the iPhone.

It turns out that my pickeyness here was a benefit, at least in my opinion. The female narrator’s voice on the Solo-Dx track took on a different audio tone than the movie so it was easy to separate the two. Also, neither ear was taken up with anything so the movie took center stage and the Solo-Dx track was secondary. I was comfortable on the couch with the phone either resting on my shoulder or sitting on the arm of the couch. (Obviously in a theatre or with others I’ll use my earbuds.)

An awesome thing about this was I could control the volume of the audio descriptions. When the movie volume increased, I just put the phone closer to me and when it got quiet again I moved the phone again. This was great, because I’ve noticed when watching movies with audio descriptions built in, sometimes the volume of the narrator isn’t adjusted so when the scenes get loud, you can barely hear the descriptions. It’s either that or sometimes the volume of the action fades out so you can hear the description. Either way it’s disruptive and draws your attention solely to the narration.

With the Solo-Dx track on my phone, the voice of the narrator at a comfortable volume, easy to control when I needed to, the movie was brought to life more than I’ve ever experienced since going blind. It was truly remarkable, being able to completely control both aspects of the movie. I never thought about it before but just like with a bad audio book narrator, a bad descriptions production can really take away from a movie. The Solo-Dx track was clear and easy to understand and the narrator portrayed the emotion of scenes without going overboard or being boring. It was really freaking awesome, no other words I can think of!

I emailed Solo-Dx excited to let them know I’d finally watched it and how cool I thought it was. They let me know some exciting news:

“We just came out with Solo-Dx for the first 4 episodes of the Walking Dead.  On iTunes it’s album-only
for $2.99.  On Amazon, it’s 99 cents per episode, or $3.96 for the album of all four.”

I’m excited about this because that show has sounded awesome but just like with movies I’ve been unable to really get into TV. I will be checking these out for sure!

So, what do you think? I think this is pretty fantastic. I had a lot of misgivings going in but now that I’ve tried it, I’m very impressed. By the way, Solo-Dx isn’t paying me to write this or anything haha! I feel very lucky to have been considered a good test subject to check this out and help get the word out to the blind and visually impaired community. I think I have a pretty good grasp on this product so please feel free to ask questions in the comments or email me and I’ll see if I can answer your questions or forward them to the Solo-Dx team.

I’m really excited about this. I think the opportunities are great in that we might be able to take descriptions with us to the movies even! I can watch movies with B and have descriptions all to myself. He no longer rents DVDs anymore since he as access to any movie he wants with his streaming subscriptions and since he does that now, descriptions are out of the question since you don’t get cool DVD menus.

Once the Solo-Dx catalogue really expands, maybe I’ll be able to say, “hey, I have this movie available, want to watch it?”

The only real lingering question I have is pausing when I watch a movie with him or someone else. Today it was simple, I just unlocked my screen and put my iPhone on my shoulder. I put my keyboard on my lap and on the second two fingered tap of the pause/play double tap, I pressed the space bar at the same time with my other hand. I paused the movie several times in this manner and only once did I get a little out of sync when my phone didn’t play it. It was easy to get it back but I’m not sure how this would work trying to pause a movie with another. I think B would probably need to let me control that when one of us needs to pause. He would need to just show me the button on the remote I suppose. I hope anyway! I look foreword to trying it eventually.

This is going to make me want to get back into movies and TV, I can tell you that much for sure. And the cool thing about these tracks being on iTunes and Amazon is you can get gift cards from friends and family to help with this. I know even $099 on a tight budget can be a lot for entertainment. I think those of you who have Netflix and such will really benefit. I might look into that myself since if I start doing more movies and TV, that might offset the cost of iTunes rentals. As of right now, Amazon streaming isn’t accessible with my Macbook which is too bad since I have a Prime account and get a lot of free streaming content. I need to email them about that. Ah, I digress.

Is Solo-Dx the next wave of awesome assistive technology for us? Could be! I’m very impressed. Oh and Hunger Games? That’s a hole other blog post. What a messed up movie!

Oh one last note, I listened to the entire credits at the end of the movie as well. The narration reads all the credits and the music was nice at the end. So if you’re wondering who played who and don’t feel like going to IMDB, just listen to the credits haha! Ok, I think that’s it.

Oh except this, follow Solo-Dx on Twitter @SoloDx1

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Filed under Adjustment to blindness, Amazon, apple Inc, assistive technologies, cool blinky stuff, cool product, iPhone, iTunes, plugs, twitter me this, word pictures

My thoughts on the RNIB ad that’s causing such a stir

I had been noticing several tweets referencing an ad the RNIB put out for fundraising. The RNIB serves the blind and visually impaired community in the UK.

Today I finally asked what the stir was and was directed to this youtube of the ad. The ad features the story of Emma, a little girl who is losing her vision. The stars fade away and one day she’s blind, calling out to her mother who she can’t see. The uproar over the ad is over the use of such a story to ask for money, because the story portrays blindness negatively and makes being blind sound like the end of a life, since Emma can no longer have the childhood she once had.

Here is where I will try and control myself. We all have different experiences. Someone who can’t remember seeing isn’t going to relate to Emma. Someone who is well adapted to blindness either because they’ve been blind since birth or have been blind for a long time, isn’t going to relate to Emma. Such people will be offended at the way blindness is portrayed.

I relate to Emma. The stars didn’t fade over time for me. The last time I saw the stars I didn’t know it was my last time. My surroundings faded away in the space of one day. I didn’t have the presence of mind to stare at my cat or a picture of my mom before my sight faded. I did stare at my boyfriend as my sight faded, and just made out the three lines on my three year sobriety medallion before my sight faded. So I relate to Emma.

Does my story make you misty? Do you think you might be more apt to donate to an organization that helps the blind? How about my guide dog school? Are you moved to help?

How is that any different than the ad featuring Emma, a child who will have to relearn how to do things with her friends? I had to relearn how to do things with my friends and I wasn’t even a child. I’m in awe of the fact that Emma will be able to ride a bike again and I’m blind. Should I not be in awe of her?

We need organizations like the RNIB, ACB, NFB, local blind centers etc. I wouldn’t have the life I have today without the blind center here or Guide Dogs for the Blind where I got my dog, and those places need money. A person with a lot of money to donate who isn’t blind or low vision or knows someone who is might just have a child Emma’s age and when they think about their own child losing their sight, they can personalize blindness, making it easier for them to open their wallets.

The RNIB wasn’t asking for four pounds a day or whatever it was to fund a vacation for the CEO. They were asking for help for future people who will need their help. I just don’t have a problem with it. I understand those who do, I suppose. I can try to understand, I guess, but all I have is my own experience which is very much like the child Emma’s.

Plus, the narrator sounded like the butler from Downton Abby and I love that show.

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Filed under Adjustment to blindness, blind opinion, GDB, gratitude, misty eyes, mom, sobriety, twitter me this, youtube

Sobriety and Blind anniversaries, Changed Plans and Silver Linings

For me, life is all about the silver linings. If I can’t find a silver lining to most things, I’ll go crazy.

It’s kinda funny how plans change, whether it be life plans or just plans for the day. While I journaled this morning, I remembered how I felt on this date seven years ago, hungover, trembling, terrified, stinky. I wrote about how I felt a little hungover this morning too, though of course not alcohol induced just sleep induced. I often feel dehydrated in the mornings with a touch of a too much sleep headache, but the feeling passes within a half hour of waking, unlike the hold hangovers.

I used to make myself wait until noon to drink a beer, the only thing that would make me feel better, because noon seemed like an acceptable time to drink. Granted, the wait was never that long since I never used to be an early riser anyway.

I love having the ability to wake up these days, rather than simply coming to. I love being able to eat breakfast and drink coffee without risking it all just coming right back up. I’m so grateful I’m not a slave to the alcohol anymore. I hope I can keep remembering how different the feelings are, because as the years pass, those old drinking days get hazier and hazier and I never want to forget why I don’t pick up the bottle. I’ve been sober longer than I drank now and that fact boggles my mind, especially since I never thought I’d make it to age thirty and now I’m thirty-three. I had certainly never planned on having to give up alcohol completely and sometimes I wish I could just have one or two, though I still say, what’s the point in one or two?

The silver lining in not being able to drink even socially? The amazing friends I have now since I got sober. My three closes girls, Carol, Chupa and Georgie, and my “brother” Kevin. I’d never in a million years trade them for the ability to sip champagne on New Year’s Eve. Hahahaha sip champagne? Really? I never sipped anything alcohol in my life!

I also obviously never planned on losing my eyesight on the day that I celebrated three years sober. Talk about crazy. I had taken the day off of work with the intention of relaxing at home and then going to a meeting. Instead, I went to the ER around noon as my vision slowly left over the space of the day. I saw the three year medallion that was brought to me in the hospital just before my eyesight left completely, and I had gazed at B, memorizing his face.

Hey, at least it’s easy to remember the day I went blind since it fell on my favorite date ever, the date I was liberated from the bondage of booze. Silver lining!

You want to know the two biggest silver linings of going blind? If you know me at all, they shouldn’t be hard to guess. My guide dog Jayden and the Tampa Bay Rays.

If I was sighted, I wouldn’t have those things. I definitely wouldn’t have Jayden. I suppose there’s an off chance Evan Longoria could have made me fall in love with the Rays even if I hadn’t gone blind, but I bet I would have just looked at him as B told me the Rays’ story, said, “pretty!” and gone back to doing whatever I used to do sighted.

Because of the Rays, I have an incredible host of friends on Twitter, one of whom just sent me a box with a Rays spring training shirt, the much coveted Game 162 shirt and a Rays cowbell, which was a surprise. The shirts I expected, but not the cowbell. I can’t wait to ring it later during the game!

This morning I had planned on doing laundry and at some point writing this post before the game. Even those plans changed, when Chupa called this morning to wish me happy anniversary. I was not about to cut the conversation short with her just to get the laundry done before it got hot. I know what my priorities are today and those are people, not possessions.

Now if you’ll excuse me, I think I’ll go edit this post and play with my dog a bit before publishing. I have to fight the new Blogger interface, so I need to have some fun first. 😉

Jaaaaaaaaaayden! Need to go outside? Yeah? Want your Wobbler? Ok! (Best silver lining ever. Would I give him up for sight? No way!)

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Filed under Adjustment to blindness, anniversary, baseball, coffeeholic, evan longoria, fellowship, gratitude, Jayden, sobriety, twitter me this

Books Four through Six in 2012 and why I pay for audio books

The week before last I did a lot of listening to books while I was sick so three books were ccompleted pretty fast. I was on a Michael Connelly kick and started the Harry Bosch series from book one. I reread book three so I’m including in the list again, which brings me to a topic I wanted to touch on since I get a ton of people who tell me how I can get free books for the blind. I know this, trust me haha. I’ll explain why I like to buy books.

A great example of why I like to buy books is the fact that I wanted to reread “The Concrete Blonde”. I know I can get books from the library, but I can’t keep them. This was the same when I was sighted. I liked to keep books because if I like a book, I’m almost guaranteed to read it again. I’ve replaced several print books I used to keep with the audio versions. When I first went blind, a friend brought me audio books from the library at the college she taught. There are several of those books I can’t remember and wish I still had, or knew the authors so I could get more or reread.

Because my introduction to audio books were these cds, I got very used to professional narrators and the production that goes into making an audio book. Call me a snob if you want, but I enjoy them. When I heard a sample of the talking books player at the blind center, it didn’t sound nearly as good to me. It’s all about what you start with maybe. I also fell through the cracks getting signed up for talking books, so when I got my computer and iTunes and didn’t have to rely on others to start the service for me, it was a relief.

When I was sighted, books weren’t free. I’m used to buying books. I’m a collector, too.

Sooo, hope that clears it up. I love my books and I can afford them, especially now with Audible.

Ok, so here’s the complete list for this year:

1. “IT” – Stephen King – Finished 1/4/12

2. “The Concrete Blonde” – Michael Connelly – Finished 1/9/12

3. “Under the Dome” – Stephen King – Finished 1/22/12

4. “The Black Echo” (Bosch #1) – Michael Connelly – Finished 1/24/12

5. “The Black Ice” (Bosch #2) – Michael Connelly – Finished 1/27/12

6. “The Concrete Blonde” (Bosch #3) – Michael Connelly – Finished 2/2/12

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Filed under 2012 Book List, Adjustment to blindness, Audio books, iTunes

Audio/Video: Hanging with Ro Episode Three – Silly Bells

I just slapped a title on this post and had to edit to say it made me think, Silly Bells…silly bells…why are they ringing you?

Now back to our regularly schedule post.

Since I went blind, I haven’t touched my Christmas decorations. This year something changed though, as I listened to audio of Carin and Steve coming up with drunk lyrics for Christmas carols. The deal was sealed when I downloaded some Trans-Siberian Orchestra. (That’s how itunes spelled it, so I’m going with it.)

It was really nice to get all that stuff out again after so many years without it. I was feeling so silly about the bells that I decided to get audio/video of the decorations. I forgot to mention during the video that the star for the top of the Christmas tree is on top of the vase with the lights in it.

I really, really really, love being a dork, if you didn’t know that already.

Topics include:

*Steve and Carin’s blog that inspired the need for bells

*Drunken angel singing. No I’m not drunk

* Video of the areas with the decorations

*Quick shot of Jayden

*Naturally, Evan Longoria comes up. I couldn’t believe it as I listened to the audio. Really? Will there ever be one of these things without his name mentioned?

Direct youtube link

PS – No I’m not on pain killers. That’s just me. =D

PPS – Now that I’m not active, the pain in my head is screaming.

PPPS – When you do multiple PS’s, is it PPS or PSS?

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Filed under Adjustment to blindness, cats, evan longoria, fellowship, hanging with ro, holiday, Jayden, mom, plugs, silly girl, twitter me this, video, youtube