Wednesday, March 30, 2011

C'mon feel the noise!

Lately I've been noticing that the world has become a much more quiet place. I'm not trying to be a smart ass either; things just seemed to be harder than usual to hear. I scheduled an appointment with my audiologist to get my hearing aid, otherwise known as "The Babelfish" turned up louder.

My SSP picked me up and we drove to the appointment in his car. Laveau usually rides on the floor between my feet in the foot-space of the passenger seat. However when I ride with friends or my SSPs who don't mind, she rides in the back seat so she can look out the window. Laveau loves to rest her chin on the shoulder of the driver and look out the front window as we're driving down the road. I swear she is either evaluating the skills of the drivers. or she is learning to drive by watching. Either way, she loves watching over my driver's shoulders.

We pull up at the Audi's office, go inside and wait to get called back. Eventually my audi comes to get me and she has an audiologist in training with her. They fiddle around for a while and crank up the volume on ye old Babelfish. It is almost maxed out. Once it is maxed out, I'll have to get a more powerful babelfish. This used to be the most powerful one on the market but they are making one even more powerful now. I'm amazed at technology. I also needed to get my streamer fixed. A streamer is a small box I wear around my neck which can use bluetooth to connect my hearing aid to my iPod or computer. I broke mine so got a loner while mine is getting repaired. When the audi handed me the loner, she said "This one is white." I just kind of looked at her because I didn't know that the color was important. Apparently mine is black and she wanted me to know that this one was a different color, or something. The audiologist in training went to change my hearing aid battery; only she didn't tell me what she was doing. She just came over, took my hearing aid out of my ear and started messing around. I got a little grouchy about this because it is rude, especially when dealing with a deafblind person, to just start manipulating a person's body or objects on their body without first explaining what you are planning to do. Apparently they don't teach them this in audiology school so I had to tell her. It is common sense to me, but I guess people are just used to being able to see that they don't think about it.

After the volume on my hearing aid was increased, I was reminded once again of how noisy the world is. Not loud-- just noisy. Everything makes a sound. I don't know how hearing people stand all of the racket without the ability to just turn off their ears!

As we were driving down the road to the pharmacy, I kept looking around trying to figure out what all the noise was. I can still only hear out of one ear so although sounds are louder now, I still can't tell where they are coming from and it is very annoying. Also, everything makes noise! Cars, air conditioners, lawn mowers, people walking, and just lots of other sounds that I have forgotten about. It always takes me several days to adjust to all of the noise when I get my hearing aid turned up.

My loss is progressive and eventually a hearing aid won't benefit me at all. I didn't get a hearing test today but I'm profoundly deaf (it is the only way in which I am profound lol) and profound hearing loss is the highest grade there is, so I'm just becoming profounder and profounder (ok ok more and more profound) as the years progress.

After we left the audis, I went to the pharmacy and then rewarded myself with a trip to
<"Angelo Brocato's">

My SSP and I sat down to enjoy a cannoli with a cup of cafe au lait. It was amazing, as always! Then I got a quart of their lemon ice gelato to take home and share with Mr. Pawpower.

I think I'll spend the rest of the day with my hearing aid off and reading the newest Jean M. Auel book "The Land of Painted Caves."

ahhh, silence, ice-cream and books! This is the life.

Thursday, March 24, 2011

I'm Gonna Clear My Heaeaead! I'm Gonna Drink That Suuuun!

It's a beautiful day here in the big moldy. I spent it at home-- unable to work because I can't wear my hearing aid for extended amounts of time due to a chronic and raging ear infection. Well, I had an ASL lesson, but that was just down the road at the coffee shop. We sat outside during the lesson and then I went home and did not want to go inside. I got out the little end table, my iPhone, braille display, iPod and huge amplified headphones. I set everything up on my porch and Laveau and I set to having an afternoon out of doors.

I cranked up my iPod as high as it would go, and listened to my favorite Indigo Girls album. I read email, and Twitter, and blog posts, and played hang man all while humming quietly along with the music.

One of the biggest truths about deafness is that quiet becomes subjective. I learned this noble truth when Mr. Pawpower texted me to say that he could hear me singing, from inside, over the air conditioning and the hammering of the neighbors; he could hear me. I could not hear myself singing, and what I thought was a bit of quiet humming had become a neighborhood serenade. Oh well, at least it was good music, and Mr. Pawpower said that I hit all the notes and that I sounded better than the other people on our block who sing loudly. The problem is, most of said neighborhood singers participate in this hobby when they are intoxicated. So to say that my singing is better than that of an inebriate is a rather back-handed complement if ever there was one.

Now that I've succeeded in humiliating myself, I have come inside, only to realize that I have sun burned the holy hell out of my face. Being a red head really sucks sometimes.

I put Noxzema on my face only to have Mill'E-Max decide that Noxzema is the new flavor Du Jour. Now I have to hide my face like a fugitive to avoid being turned into the canine version of an otter pop.
I just can't win!

Wednesday, March 23, 2011

I Want To Ride My Bicycle

This morning, my husband, Mr. Pawpower and I some how got into a conversation about our first bicycle experiences as children, and this inspired me to write about mine here.

I was born with
<"Optic Nerve Hypoplasia/Septo Optic Dysplasia">

This is a congenital brain malformation which can cause, among other things, blindness, and short stature because the pituitary gland is damaged and does not produce growth hormone. I stopped growing when I was around three or four years old and did not begin growing again until I started receiving human growth hormone injections at the age of eleven.
My parents always encourage and expected me to be just like everyone else. I played with my sighted sisters, and our sighted friends. I was basically an ordinary kid, with the exception of not being able to ride a bike because there wasn't one small enough for me.

Once I began growth hormone treatment, I started growing rapidly. Before long, I was tall enough to reach the pedals on my sisters bike.

I have always had especially crappy balance, and learning to ride a bike-- even with training wheels-- was quite a challenge. I had to focus on the bike, focus on my environment with my hearing and my very limited sight, and coordinate my arms and legs to move around objects in my path. After a while I got pretty good at the whole training wheels thing.

It was time for the moment of truth... The training wheels were removed and I spent many hours in the summer between sixth and seventh grade getting on the bike, pedaling a few feet, losing my balance, falling off the bike, getting up and repeating the entire process.

I will always remember the first time I actually rode for a period if time longer than a minute. The sun was just setting and my mom had called us girls in to get baths and get ready for bed. I begged for "just one last try."

I got on the bike, determined as hell that I was going to do it this time. I started off-- heading west, toward the setting sun. I focused on pedaling, keeping the handlebars straight, looking ahead, and keeping my balance. I wove around like an inebriate, but eventually I did it, I was riding the bike. I rode round and round and round our street, laughing my head off and so proud of myself. Unfortunately, I got distracted by the thrill of it all, lost my concentration, and hence, control of the bike. I flew ass over teakettle and landed in a heap in the road, tangled up with my sister's red bike, still laughing like a maniac.

I practiced riding the level streets at my mom's house. When I got good enough so I wasn't falling on my face every other time, I decided to take my new bike-riding skillz to my father's house to try it out on the streets there.
My father lived in a subdivision, at the very top of a pretty steep hill. I was confident that I could handle it-- after-all, two weeks had passed since I had last fallen off my bike at my mom's house.
I started off at the top of the hill, clutching the handlebars for dear life, and focusing on the street ahead. I pushed off and began pedaling. Because of the grade of the slope, my bike began picking up speed, rapidly. I got about half way down this very long hill when I made the startling realization that I was no longer in control of the bike-- gravity had taken over. I went faster and faster, the handlebars began swiveling back and forth and it was all I could do to maintain control of this mad beast of a bike. Unfortunately, in my effort to slow the bike down, I neglected to watch where I was going. This led to my face, meeting a mailbox at the bottom of the hill with a great deal of force. The mailbox stopped me in my tracks and I flew off the back of the bike which continued on for a few more feet before falling over like a wounded pony. It hurt, it hurt a very great deal. I do recall a substantial amount of blood being shed.
The neighbors were horrified; the little blind girl riding a bike! What were her parents thinking! I cleaned off the blood, retrieved my bike, and lined up at the top of the hill once again.

This glimpse into my childhood tells a lot about my character. Call it determination, call it stupidity or stubbornness, or just plain force of will. Whatever it is; I possess it in spades.

In december of that year, I turned thirteen. I sang in the school choir and we had a concert on my birthday. I remember going home once the concert was finished, expecting to enjoy a bit of birth day cake and some presents. My father told me to go into my room and change into my pj's first. I was rather surprised when the rest of my family followed me up stairs. I opened the door to find my very own bicycle assembled at the foot of the bed. It was a Huffy. It was the palest pink. It was one of the best birth day presents I think I have ever received. It was a lesson to me that if you work hard, get up when you fall, clean up the blood and continue pressing onward that you can make your dreams happen.

Saturday, March 19, 2011

A Consecutive Kind Of Life

I just finished a book called "Of Such Small Differences" written by Joanne Greenberg. The story is told from the point of view of a Deafblind man in his mid-twenty's. It was written in the mid 1980's so it is not, from a technology standpoint, very relevant to now. All of the characters in the book appear to use
<"The Rochester Method">
with some ASL signs thrown in at times. I think the author of the book is hearing, so it isn't a "real life experience" of an actual Deafblind person; such as the books written by Helen Keller or Robert Smithdas. It's very obvious that the author did her research and for its time, the book is pretty accurate.

People ask me all the time, "What is it like to be deaf and blind?" and reading this book helped me to answer that question more fully, I think.

Hearing/seeing people have multi-tasking lives. Take one of my best friends for example. I've seen her in her kitchen, whipping up a marinade with one hand, while her other hand holds a phone. She is scrolling through her text messages while talking to her husband or kids. There is a TV on and in between stirring the marinade, reading texts, talking to her family, she manages to catch what is on the television and she laughs at a joke, or swears at yet another hopeless politician. This same friend gets into her car and drives. She is talking to a coworker on the hands-free phone, while taking notes and yet she manages to spot one of her kids squirting the other with a packet of ketchup she found on the floor. This is normal, this is everyday life for most people, all of this multitasking.

A deafblind life is a consecutive life. When I cook, I am cooking. I cannot take my phone into the kitchen because it is connected to my braille display which is very fragile, and if it breaks the repairs will take at least a month. It is vital to my independence for me to have a working braille display so I try very hard to keep it clean and that means keeping it out of the kitchen. If I need to write down a recipe, I write it in hardcopy braille on sheets made of thermoform which is a kind of plastic. This way if I spill on the page I can take a damp rag and clean it off with the braille being no worse for the experience.
When I am cooking, I am focused on cooking. I can't have a conversation with my hands because more than likely, my hands are buried to the wrist in ground meat or dough. Cooking, like everything for me, is a very tactile process. I can't hear tv, I can't hear music unless it is patched through the TCoil on my hearing aid, and through a neck loop to my iPod. I hate wearing my hearing aid at home so that means no music. Cooking time is for cooking.
When I'm done with cooking, I can then have a conversation with my husband, and then I might open up my computer and look at a website for the news, read my email, pay some bills.
When I'm done with my computer I put it down, move to the phone and braille display to check texts there. My friends who text find this very frustrating. When you are hearing/sighted, texting is instant. You get a text, and you pull your phone out of a pocket, quick tap out a message and put the phone back; moving back to the task you were just doing. My phone is an iPhone connected via bluetooth to a braille display. This setup is the size of a video cassette; remember those, back when dinosaurs roamed the earth? :) Its very size means that I can't just put it in my pocket. I can't briefly check messages and just move on to what I'm doing. If I'm in the other room, or even across the room from my phone I don't even know if I've gotten a text unless one of the dogs or my husband tells me. It takes longer for a deafblind person to have a text conversation unless I've decided to sit down and make texting my focus for that period of time.

When I walk places, I am paying attention to what is around me; the feel of the sidewalk, the positioning of the sun, the textures my arm encounters when I walk. These are all things which give me confirmation of my location. When I get to the street, I pick up my tactile mini-guide which has been hanging from a cord around my wrist. It is a small unit-- about the size of one of those containers of Airborne you buy at the drugstore. It vibrates when it detects obstacles in my path. The nearer the obstacle, the stronger and quicker the vibration. I use a tactile Mini-Guide to help me read traffic patterns so I know when it is safe to cross the road. When the cars are going in front of me, I will feel the slow-quick-slow, slow-quick-slow pattern of vibrations as the cars move by. When the cars to my side are going, I won't feel any change because my path is clear to cross.
When I'm walking, this is the time for me to listen to my iPod. I turn it off at street corners so I can focus on making a safe crossing, but otherwise, walking time is music time for me. It is very hard for me to have conversations either in ASL or spoken English while walking because if I'm going to sign while walking, it is best for me to go sighted guide with the person I'm chatting with. I don't like going sighted guide because I feel like I already give up too much control of my life to too many people. When I walk, I want to do it myself with my dog. Sometimes I will go sighted guide with people I trust a very great deal, usually at Jazzfest with my ASL interpreters, sometimes with my SSP if we need to talk and walk at the same time.

I can't really communicate in spoken English because I hate using my hearing aid on its regular setting when I'm on the street. I can only use amplification in one ear, as the other ear can't hear at all. This means that I don't hear in stereo. Hearing in stereo is what gives hearing people the ability to locate sounds, and use sounds to orient and navigate. Having the use of one ear means that I can hear sounds-- usually only the loud ones like noisy car engines or cars backfiring or police sirens. But because I have no ability to tell where the sound is located, all those loud sounds seem to be right on top of me. I feel like I'm about to be run over at any given moment. Because I am blind, I can't rely on my vision to tell me otherwise. The entire experience is terrifying and makes me cringe away involuntarily which just confuses the hell out of my dog who can't figure out what the problem is.

It is better for my nerves if I just set my hearing aid to TCoil, which blocks out all sounds except for what is coming through my neck loop from my iPod. I can walk and enjoy music while Laveau takes care of the hearing and the seeing. I still need to be oriented-- have an idea of where I am and where I'm going, but I don't need sight nor hearing to do those things.
I think my life would make most hearing/seeing people nuts. It would probably seem very methodical and slow, without enough stimulus. Then again maybe not. I find that living this way helps me to be present in the moment. I think that Buddhists call this mindfulness. For the most part-- deafblind people live very mindful lives.

Wednesday, March 16, 2011

Kiss me, I'm Irish!

Saturday I went to the St. Patrick's day parade. This is one of my two favorite parades all year. My friends came to pick Laveau and I up about an hour before it started. We like to get good seats, find beverage (usually of the malted-grain variety) and scope out the men in kilts. Ok, truth be told; I like men in kilts-- my friend enjoys describing them to me. So we are both happy.
Only my friend's husband decided that he wanted to park in a more residential area and not in an area where all the action was taking place. So after setting up our camp chairs, my friend, Laveau and I headed out for beer and men in kilts, hopefully in equal measure.

We soon met up with some people who were friends with my friend and they offered us some beer. We stood around on the sidewalk and drank and talked. We eventually took off, beer in hand, to fulfill the other half of our mission; the finding of men in kilts.

Let me just stop and say here what a fabulous job Laveau did. She followed my friend, and wove me through crowds of people, children on their ladders, brass bands lining up for the parade and barricades. People called to her, patted her head as she walked by and she just ignored everything.
Eventually we got to the parade staging area and found some men in kilts, with bagpipes no less. There must be some obscure law of physics which states that that a man's sex appeal increases about a hundred-fold if he is wearing a kilt and playing a bagpipe. Or maybe I was a Scottish Highlander in a previous life. Either way, I think kilts and bagpipes should come back into style.

We needed more beer before the parade began, so it was off to a cafe for a bottle of Abita and a little sit down before we attempted the trek back up to where my friend's husband was sitting with our camp chairs.
We sat and chatted for a while, then took our beers and began walking the several blocks back to our spot.

We made it there in time for me to get Laveau settled between our two chairs and for me to get a good standing spot behind the barricade.
Then it started. Floats and marching clubs, and school children. People threw cabbages, carrots, candy, and mardi gras beads. Oh and underwear. I was given a pair of bright green bikini panties complete with shamrock. I immediately stuck them on Laveau's head because they would look much better on her than on me, that is for sure. Then I was gifted with a green lace garter which went on Laveau's neck, along with the shamrock beads. I also got lots of paper flowers and drunken smooches from the marchers, some of them even had kilts on. Do you see why I like this parade now?

Through it all, Laveau lay down and watched everything. She actually really enjoys watching parades.
When it was done, a loose dog came running up to her barking. I was nervous, but immediately dropped the harness handle and lengthened the leash. The other dog immediately calmed down and began greeting Laveau who greeted back with enthusiasm.

After that, we got in the car and headed home.
I still have to use the cabbage in my fridge.