overconfidence

So here I am all confident and strutting along with my cane (actually it's more like a blind person walking strut) and "smack" right into a wall. So much for confidence. It was a wall I go by like 8 times a day too. I have to laugh...I pictured myself looking like a fly splatted onto the wall. So, I may have come a long way with cane skills but I still get myself into trouble when I don't use it correctly. Guess I was swinging it out of step so it didn't catch the wall before I got to it. LESSON FOR THE DAY!!!

This week has been slower b/c more people have been graduating from the program. So we have ceremonies each time and miss our afternoon classes. We have a lot of new students that have been coming in so things have been switching around and such. Since I'm no longer new I need to help acclimate the new ones to the place and help them figure things out. Can get kind of stressful trying to keep track of everything and being a mentor. Plus I'm still dealing with my own insecurities and lack of travelling abilities.

Today

Today went pretty well. For travel we were sent on an independent (me and Mark, another student). We had to go around the neighborhood a certain number of blocks and find our way back a different direction. We got lost at an alley, but it was warm outside and I kinda had fun trying to figure it out and making jokes to pass time. Made it back. Of course I was walking in the middle of the road again like I always do...but at least it was a residential road and no cars were around. I did eventually run into a curb and figure out where I was.

I am enjoying wood shop. Got to work on some more of my project and used the table saw. I'm actually not really all that afraid of the thing. Still cautious and safe but no longer afraid of it. Have used the miter saw and router table without assistance now. I like being all independent with the power tools. Kinda makes me feel like "Go Woman...or Go blind Woman." :-) I don't think I'll use the table saw without Merle spotting at the end b/c it's really easy to have the board spit back at you. It can really hurt being hit with a piece of wood at that kind of speed. Not really worried about my fingers since I know the techniques that even sighted people should use.

Firealarm

What a crazy day. It has been pouring down rain and now is snowing a lot. Well what would you know but we had the fire alarm go off. This is no surprise except that the day it had to happen was a lousy one. We were all soaking wet with hardly anything warm on b/c we were all in classes. The fire department came and let us back into the building as soon as they could. We were soaked to the bone...like we all went swimming in the Platte River or something crazy like that. Dry clothes were being handed out for folks, people had the laundry running (no shoes allowed), and we were all mopping up hair. Soooo wet.

Nice that we got out early....I really like sitting in a warm apartment with my clothes being washed and not having to be so soaked anymore. Ahhh such pleasures of life!!!

Today was a wet day of travel. We were travelling in a thunderstorm and rain on and off. I was pretty quick in my walking...to about every shelter or covering I could find. It went well though. We travelled to Aspen Grove shopping center and I only ended up in a lane of traffic once...and no one was on it. I felt pretty confident since I've been on that same route sighted many times. So I knew what to expect. On the way back I got off the train and went to walk across the second set of tracks and halted to a stop really fast b/c I just about walked into the moving south bound train. I literally felt my hair swish. Ok I was not ok with how close I came to that train...never heard it b/c the one we got off of was making plenty of noise. Sheesh!!!

Braille is very complicated right now...I'm learning contraction signs like ble, ing, com, and others. They all have rules of when to use them in a word and the signs don't necessarily have some pattern to them. It's raw memorization. Ahhhh!!! Brain frizz!

Roadblocks

So far I have still been doing well with my sleep shades and not allowing myself to peek. I get more and more comfortable with them the longer I make it too. Today during travel we needed to catch a bus to our destination. Well I went as fast as I could to keep from being late and we missed the bus by about 2 minutes. So we walked....crossed lots of driveways, small roads, roads with medians, and two major intersections. It was exhausting and required more brain work than I would care to put in. Well at one point we were crossing a small road and had to listen to our parallel traffic on Littleton Ave (which is a big road). I was trying to follow traffic and started to veer. Well the cars that saw me coming would move over into the far lane to keep from hitting me and continue past. Problem was I was focused on making sure I was lined up with traffic that as the cars moved over I also moved over...soon I was wondering why I hadn't hit the other curb yet and found out that I was actually walking in the middle of Littleton Ave. That is a major road and is really the wrong place to be. My travel instructor called me back and I was able to quickly realize the problem and move to my right to correct for it. Gosh I hate how badly I do with following traffic and localizing sounds. I try and maybe it isn't something I can change, but I really want to see if I can figure out a way to do this. So far I am still alive so that is a good sign!!! I also crossed a few of them pretty well so instead of only focusing on what I did wrong (even if it was a major one) I should still see what I've done well. Otherwise it can be very discouraging!!!

Successful week

All in all this week was successful. I made it the whole week without peeking. My travel instructor is planning to buy me a gallon of cold stone creamery if I make it the rest of my program. Can I do it????
Anyways we were sent one day to find a gas station on Sante Fe during travel. My instructor was supposed to meet us halfway and was delayed. So Mark and I ended up doing it all on our own and got there. It was hard. I had to cross two intersections and three roads with stop signs. Then I got tangled in a tree that was attached to the back of a truck sitting in a driveway. I was hollering about annoying trees and ropes and trucks...Mark was laughing at me. It was kinda humorous!!! But pine needles hurt and I kept really getting tangled in them. Oh well I lived to tell about it. The intersection crossing was hard...I ended up crossing diagonally across both roads...and Mark was asking where I was going since I sounded far away. I figured out I was in the wrong road. Had to find my way back to the curb. I lived to tell about that too. The gas station has a big open lot for cars to drive in and I got way confused on that trying to find something to indicate what directions the building was in. I could smell gas pumps though and a car wash. It's that odd...smelling a car wash? Even though it was hard it felt successful b/c I never cheated.

Today

I had a successful day today. Still on my no cheating run for a few more days....my friend Heather is buying ice cream at Cold Stone if I win the bet and can make it 3 days total without peaking. So far 2 down 1 to go.

Anyways I was sent to Englewood station, which is a mess of obstacles, and we had to go find Hampden Ave. Then my instructor sent us back on our own. Mark and I were hoping not to get too lost. I was being dramatic like always and managed to figure out how to get back at least near the library. I did get stuck between a column and a wall. Couldn't figure out what the heck was going on. My instructor finally took pity on us and helped us find our way back to the station. I am feeling a little better about traveling....at least I'm not afraid of getting hurt while using my cane. I don't know how I will ever figure out directions and finding places though without sight. We'll see how it goes. Hopefully it's a skill I will start to figure out.

Big Schedule change

Today was a challenging day to say the least. I did enjoy it until I got overtired. My friend Joyce and Ayumi came to pick me up from the Center and I took them on a tour of Denver with my sleep shades on. Thankfully they were sighted so they could pull be back into the correct crossing lane every time I crossed an intersection. We took a bus from Broadway Station into Denver, ate some Japanese food, continued taking the bus into the city, walked awhile through the 16th Street Mall, stopped at a Japanese food store, and them got back onto light rail from Stout and 18th. I actually could use chopsticks with no vision. HA!! I got a kick out of that. I had a lot of trouble knowing when I got to a street, finding the low spot to cross, and figuring out my orientation. If only things were made to be blind accessible....ha yeah right. That would be too easy and I don't attract anything easy. :-0

It is really hard to do that much thinking about what is going on around you without tiring really easily. I was wiped and emotional right on top of it. I didn't cheat & peak so that is exciting for me! Emotionally I really had to deal with my fear of being totally blind. I don't know how I am going to have a normal life and do much of anything. I know I am training so that I can, but it is still so daunting. Travel and communicating is so hard and a lot of work, especially with my hearing loss. With my field test results it wouldn't surprise me if I am total within only a few short years. That freaks me out! Of course miracles happen and progression can do many weird things. So there is still a small tiny chance I will keep some vision. Likelihood of losing it all with Retinitis Pigmentosa is still pretty high. Big travel assignments and anytime I have to do something out of my comfort zone (which is always lately) tend to bring my future prospects crashing into me and leave me reeling. I need to do them, but it usually takes some time to recover from it and go back to pretending everything will be alright.

Saturday Meal

Last night my friend Kristen and I made a dinner fir about 10 people at my good friend Joyce's house in Evergreen Colorado. Gluten free Strawberry creme tart and salmon patties with quinoa instead of flour to make them gluten free. The food tasted fabulous and I had a great time. There was a major point of frustration when flipping the salmon patties was not going well. They did not want to flip without trying to come apart. Kept burning our fingers on either the frying pan or the griddle. I'm going to have calloused fingers after too many more griddle burns. Fortunately it wasn't super hot. I have to say at that point I was worn out and emotionally charged. I was tired of wearing sleep shades and just wanted to stop. Cooking is hard and under sleep shades it's longer and harder. Nice thing about sleep shades though is that onions don't make you cry and when you do start crying from frustration it hides it well. Instead I just kept laughing. That's generally my way of crying (anyone that knows me well can attest to that).

Aside from frustration during the flipping of salmon patties I thoroughly enjoyed my time there. Lots of friends and showing off some of what I have been learning.

Learning my lesson

I have to chuckle. Here I am training at the center for independence skills while blind and learning a philosophy that blind people can do anything and can do it for themselves. I was at Qdoba (a burrito place) with my two friends Heather and Kristen. They are both total or close to it. I am still sighted without my sleep shades. Anyways Heather finished her burrito and I proceeded to clean up after her. She got so annoyed with me and told me flat out that she could do it herself and I wasn't her mother. I knew that, yet all the sudden I started thinking like I used to and proceeded to "help" her do something she was perfectly capable of doing herself. Guess training hasn't stuck with me on that aspect. I train with this philosophy and yet forget about it as soon as those sleep shades come off. She forgave me of course but it helped me realize what it means to us as blind people to be independent, do things on our own, and to be allowed that right by others. Oops!!! At least I learned that lesson with a friend who willingly tells me what she thinks and will still like me afterwards.

On a side note, I have a funny story my roommate shared with me. Apparently she was getting into a car with her mom in a parking lot and walked to the passenger side, opened the door, and sat down only to find out she was in someone Else's car. The guy was like "ummm I think you are in the wrong car." "Oh I'm sorry sir!" She proceeds to get out and get in the correct car. Oh what a riot. I was totally cracking up on the train when she was telling me this story. Hilarious!!! I love the crazy things we all do...they are so much fun to share with each other and hear.

Amazing People

We said goodbye to my tech instructor yesterday. It was sad for me b/c I really enjoyed her and formed a friendship with her. She left to pursue other interest. I am amazed by her story. She is so incredibly smart and spent her life learning to overcome blindness as well as Cerebral palsy. She uses a wheelchair and a cane to navigate with. I really learned to put aside my preconceived notions about CP and about wheelchairs. It's interesting how we can have a disability and find ourselves almost doing to other disabilities what we can't stand people doing to ours. Judging, forming biased opinions, and such. Prejudices are prevalent in even the groups of people who experience it regularly. It is not just an issue that "normal" individuals have. Jen was definitely an inspiration to me. She has overcome so much and is wicked smart. She knew all the math stuff and could talk "shop" with me. She was such a techie, and she was fun. I will definitely miss her and wish her the best.

Funny pic

This is funny. I found it online. Actually the sad thing is it's the reason why I got my last ticket when I used to drive. I blew through a stop sign I never saw. I couldn't really use that line on the cop though!!!

Master Drive on TV

Our group actually showed up on TV. Here's a few links that have videos on them.

http://cbs4denver.com/local/Blind.drivers.Students.2.1012857.html
http://cbs4denver.com/local/blind.drivers.obstacle.2.1618764.html

It was pretty exciting for all of us. One of my good friends, Kristen, is the "star of the show" in the video section of the second link.

master drive

We went to a driving school called "Master Drive." It made for an interesting and informative day. Basically spent all morning there. The idea was to get us behind the wheel to feel what it was like to drive. A majority of us had never driven and some of us, like me, used to drive until we lost enough vision. It was a lot of fun! We had an instructor with us that gave us directions and we would steer and hit the gas and brakes to drive around a course with cones. I hit plenty of cones and find it very unnerving to drive without seeing where I was going. I had to trust my instructor. TRUST is a key word I am noticing. For someone that has driven before I didn't do as well as I would have liked...but it was just for fun after all. After the cone course we did skids. They would have us start driving really fast and let go of the gas so they could set us in a skid. Our job was to recover from the skid. Surprisingly enough they were saying that we blind people tend to do better than their sighted students, b/c we have to feel the car. I did very well coming out of the skid. I could actually feel the centripetal forces on the car and the shift in weight. By feeling it I was able to anticipate what I needed to do and correct. I absolutely loved how I could feel it all. SO different than using sight. But it had so much information in it. Actually felt like I was one with the car. I thoroughly enjoyed it!

We had some news stations show up to cover us. I actually almost knocked over one of the cameras and the camera man was like "uhhh go left." "Oops I hope I didn't knock someone over!" "Uhhh no just almost got the camera." I kinda got a kick out of that. I also got lost a few times trying to follow the group and not hearing well enough to figure out where everyone was exactly. Good thing some sighted people were around because they usually went to fetch me and bring me back to everyone else.

As said and done I enjoyed the experience but I also struggled emotionally. One of the hardest things I've had to deal with about my blindness is losing the rights to drive. I miss the freedom. I miss being behind the wheel. It is so hard for me to lose that. I was very quite and nostalgic while some of the other students were driving. It was like a reminder of what I can no longer do and it is hard to handle.

Field test image

I thought I'd post what my visual field looks like so you could have an idea how a high field loss shows up on scans. They flash lights and you indicate when you detect the lights. This maps out where regions of blindness are located...you'll notice different shades of grey, black, etc. This represents how much light you can detect in that region. It shows up darker if you need more intense light to detect it. Included is a pic of a more normal field test as well for you to see a comparison. There is a dark spot that shows up in everyones field test...it is where the blind spot is located (where ht optic nerve is located). It is normal to have that dark region. For me though it seems like one giant blind spot everywhere.

Field test

Today I had another field test at the ophthalmologist to see what my visual field looks like. It's been a year, so I was due for anothe. I have definitely been seeing more of a tunnel now in my vision and asked what my actual field of view was. He says 5 degrees. Normal is 120 degrees and legally blind is 20 degrees. Humm well I guess I can get my tax credit for being legally blind. He said it looks like it hasn't changed too much so of course b/c I am a bad patient I asked if I could drive. He was like "with a 5 degree field...NO!" Grumble grumble....I figured it couldn't hurt to ask.

I kinda would like to know his definition of stable b/c in 2 years I've gone from about 60 to 5. Doesn't sound stable to me...but whatever. I didn't go getting a doctor's edumacation!!!! I do know math and 60 and 5 seem kinda different. One of the techs looked at me and said "wow you are a tough patient." My response..."I've been told that for a professor I make a bad student. Not much difference here!"

[ok I'm back at the computer after examining my copy of the peripheral scans]....I am a scientist after all and need to understand all these things. I think I know his definition of stable now....he looks at the central region and the diameter of perfect unaffected vision is the same at 5 degrees. The surrounding vision though has darkened. I would think that would matter....Before I could pick up higher intensity light in that region...but now it's unresponsive to pretty much any light. Well as a blind person that is significant. Explains why I see a tunnel now.

He says that when he looks into my peripheral region all my blood vessels are atrophied and almost gone. The central is still looking good. Remember that by central I mean that little 5 degree part. He then gave me some eye drops for blood flow. The primary ingredient is Rogane...how crazy is that. I looked at him and said "are you telling me to put hair growing chemicals into my eye." He laughed and said my eye wouldn't get hairy. Hummm well I would think a hairy eyeball would work against my vision. I was like "I really don't want to have to shave the rest of my body more than I already have too." Ok some of you are probably thinking TMI. Yes I am a skeptic...perhaps I will just go back to acupuncture. At least it's ALL NATURAL and doesn't include hair growing stuff.

Hearing loss

I find it interesting that while my hearing has not gotten better I have been able to use what I have much better. I am noticing things now that I would not have noticed before. Sound quality is still bad compared to normal hearing (although the new hearing aids help)..but picking up noises I need to listen for has gotten better. For instance...when the train pulls into the light rail station I am noticing the sound the tracks make as the vibrate before I noticed the bell on the train. Unique noise I must say. I don't know where the doors are when they open but I am noticing when they open. The bi fold doors are louder than the sliding ones. I usually can't pick up the sliding doors. I am very fascinated by how the brain works to amplify the senses you need when one fails, even if the other sense is poor.

I had another interesting and successful day yesterday. We had apartment inspections (which I passed without a problem) but I had to get around and use my problem solving skills to get where I needed to go without my instructors help. I find it difficult to follow people and really localize where they are talking from. But I managed and only fell off the curb a few times.