Prep for Graduation Meal

Our final requirement is to cook a meal for 70 people. I began making it early this week. Monday I went shopping for it blindfolded. Tuesday I made the chocolate chili truffles and botched a batch, so redid it today. Wednesday I made the main course. A mushroom pesto chicken bake. Had about 8 trays with two layers of chicken. Tons of food. Today I finished the truffles and cleaned the lettuce for my salad. Tomorrow is my big day. No more sleep shades after that.

I was so exhausted after a full day of cooking chicken bake and not finishing until 4:30. I never wanted to set foot in a a kitchen after that.

Last week Monster Route

One of our big travel requirements for graduation is a monster route. We travel to 4 different cities within Denver and visit four locations. I picked Starbucks in Littleton, A bird store in Lakewood, A bakery in Wheat Ridge, and "My Big Fat Greek Cafe" in Denver. We have to do this under sleep shades and use the transit system to get from place to place.

My morning started off with getting lost in a grassy field behind Starbucks and some driver turning around and coming to me in the field to help. I was so grateful. He helped me get out of the field and back to the parking lot to Starbucks.

After that I got onto the sidewalk to go catch the bus and ended up accidentally going onto a traffic median and completely confused myself. Traffic sounds were wrong and I had no idea how I got there. Someone so me looking confused and helped me get back onto the sidewalk.

At my next destination some guy saw me and decided he would hang out with me and socialize. I got to hear all about his trailer and lack of job and ....oh Gosh I was wishing he would go away. He followed me to the bird store and sat with me while I listened to them for an hour and then took me to a bus stop. Thank God he didn't come with me on the bus and go to my next destination.

I made it to the bakery and then some guy helped me cross the road to catch the next bus. It was a busy road so I was grateful for his help. Of course while I waited for the bus he proceeded to get his car and drive up to me wanting to give me a ride. "No sir I have to use public transit." Thank goodness for that rule so I could use it as an excuse. No Hitchhiking allowed on Monster routes.

I had two bus transfers before my final destination. Looked like a lost blind girl and am glad I couldn't see how I looked. I ran into every pillar and bench and pot of plants on the whole sidewalk (at least I think I did).

I had to cross one last big intersection to get to the restaurant and was so confused and traffic made no sense. Turns out the intersection was shaped weird and didn't have very good identifiable crossing ramps (wheelchair ramps). Someone helped me then too.

I am so grateful there are plenty of people out their that want to help. Just wish the weird guys weren't so attracted to me.

Touching - for us dreamers

This is for all of us out there who dare to dream big despite the odds, despite the lack of belief in us, despite disabilities that "appear" to restrict our capabilities. Despite what the world says we can do anything we put our hearts to!!!

http://www.youtube.com/watch?v=Um9KsrH377A

Thai Pantene television commercial. Its simply brilliant. The story of a deaf and mute girl who learns to play the violin against all odds. One of the most touching advertisements Ive seen in a long, long time.

My Big Drop

I finally did my independent drop today. It was the one requirement I was most afraid of. It is similar to my support drop (where I get dropped off in the city and have to find my way back under blindfold) but this time I did it without anyone with me. I was all by myself. Scary! I did it though.

I was dropped off in a residential neighborhood next to Broadway. At first I checked based on where the sun was and found that I was on a north south road so that meant that the busy street I heard to my left was also a north south road. Most north south roads have buses. So I knew I needed to get over there. I got to the intersection of the road I was on and could not find a wheelchair ramp (which is a helpful important marker to use in aligning to cross a street). Not all residential streets have them. So I got off the sidewalk and used the gutter along the sidewalk to line myself up and listened for a while before crossing the street. I made it across. Phew!!!

OK so now I headed toward the busy road and got stuck next to an air conditioning unit (at least that's my guess) and was freaked out about how to get around it. Was afraid of chopping fingers off. Gee the irrational things that go through the mind when blind! I finally got around it and finally got to the busy road. I wanted to go right so I wouldn't have to cross a street next to the busy LOUD road and got stuck by a fence and tree.Couldn't find a way around it and needed to go left and cross the smaller street next to Broadway. A nice guy come and asked if I needed help and I was so happy that he was there to get me across. Still didn't use up my question though. I phrased it so it wasn't a question. Then I got stuck on the sidewalk and couldn't figure out how to get realigned...probably nerves messing with my brain b/c of this loud nerve racking street next to me. The guy came out again to rescue me and took me to the bus stop down the sidewalk a ways. I had said "I'm just looking for a bus stop!" Even though I didn't ask a question I was so upset that it meant that I cheated. The bus came and took me to the light rail station. That was my question "DO you go to Light rail?" When I got off I got stuck on the bus island and the driver got off and walked me across...I did say I was supposed to do it by myself but people do like to help blind folks out. Once again I thought I cheated and cried on light rail. I was so afraid I'd have to re-do this drop and that I cheated myself out of a real accomplishment. Everyone at the center thought I did fine and didn't cheat. It took some convincing to myself though.

All in all I did survive and I learned that people are more helpful than is always realized. Even if I do go deaf blind ...as long as I'm in a busy area I will always have the help I need to cross busy streets. Nice to know!!!

Mini Meal

On Friday I served my mini meal for 15 under blindfold. I had most of the food prepared and ready the day before. Sausage soup, Brazilian cheese bread, and then I prepared the green beans the day of. I did ok, but got a tad annoyed and stressed that people were all coming into my cooking space and impeding. I was very frustrated and wanted to yell at everyone to get the #$%& out of my kitchen. So polite huh!!! I served it without much problem and it turned out well except for the gluten free bread. Yuck!!! My friend Mark helped serve the food.

Mini meal

Another graduation requirement is to make a meal for 15 people under blindfold. I started cooking mine today and will serve it tomorrow. I'm doing a sausage soup that I love, green beans, and gluten free tapioca flour Brazillian cheese bread. We'll see how they taste tomorrow. I took all morning. Making meals when blind usually takes three times as long. It gets tiring. But I did it!

Support drop

Today I had a support drop. It is one of the graduation requirements for the program. We get dropped off somewhere in the city and have to find our way back to the center and can only ask one question. We don't know where we are dropped and have to use our special techniques to find our way back. I got dropped off in a residential area and started by listening for a busy street and heading towards it. It was a few blocks away. Once I got to it I walked alongside of it hoping to find a bus stop. Of course I missed them all and kept walking. We did get to an intersection with a median and that confused the heck out of me. My instructor came with (support drop means you have someone with you). He stopped me from walking right in front of an oncoming truck. Phew!!! Anyways I kept walking until I got to another big street and since I hadn't found any bus stops I decided to go north. (I was able to figure out my directions N,E,S,W based on where the sun was on my face). After going north a few blocks I got honked at by the bus. I was so happy he stopped me and honked. I was able to get on and find out (using my one question) that the big street I wanted was Evans and it was the one I had been walking on all along. Go figure. The bus drove me back to that same block and this time I found a bus stop. Actually I was passing it and felt the cold air from inside the bus and heard the driver shout. I was so happy to be on that bus. I was so hot outside and this was going on about 2.5 hours. I knew this bus route and got back to a light rail station and got to the center from there.

I was so happy I screamed "I made it" as soon as I walked into the door of the center. Whoohoo!

NFB Convention 2010

Convention went well but it was too long. A week is way too long. I really hated the beginning of the week b/c the individual sessions were boring and I didn't get much out of meetings like "Blind parents group" or "Blind Educators" b/c people spent more time complaining about their life circumstances than talking about tips or tricks or valuable information. Once we started general sessions the week went better. I learned a lot about the National Federation of the Blind (NFB) philosophy, about blindness issues in society, about attitudes and mentalities, about research, etc.

I also found it helpful being able to research technology that I can use to help me in my graduate work and teaching. I have been so afraid of the notion that one morning I could wake up with no vision or that one of my blackouts would result in my vision never coming back. But now I feel more confident that with the aid of certain technology I could continue grad work and find a way to succeed. Too bad everything blind related costs an arm and a leg though.

We had convention in a huge hotel. I've never been in one this big. With 3,000 blind people and all their canes and dogs...I was ready to scream. Smack, smack, smack. We all collided into each other on a regular basis and people were getting rather annoyed with each other. My friend broke two canes and I ended up letting her use mine, which left me with nothing. I still have some vision that I was able to get around the old fashioned way without breaking any arms or legs in the process. :-)

I have to say I'm not sure I want to go to another convention. Just a tad stressful and way too many people. I was grateful I wasn't forced to wear sleep shades the whole time. I would have sat on the floor and cried. The whole building was made of marble and the few times I did use sleep shades I couldn't hear much useful info. It was so loud and echoey. I also tripped like 5 people in a matter of minutes. Whoops!!! I am so glad to be back home!

Interesting Dynamic

I do notice an interesting dynamic for me as a high functioning partially blind person that it seems I am very much straddling both worlds. I’m too blind to be sighted and I’m too sighted to be blind. There is an attitude that permeates the blind community that anyone with sight or some sight is or could be an enemy to the blind. Or someone with partial sight has denial issues b/c they need to allow themselves to be more blind and live like they are totally blind. It’s this whole “they think they are superior” or it’s “us vs. them” attitude that is prevalent. Then as a blind person I deal with the other side of the coin too with the sighted community. I don’t really fit in either one and it becomes very apparent at times. I think I would use this analogy as a comparison. An adopted black child into a white family would notice they are different somehow. They know they are loved and accepted by their family and friends, but they feel out of place among black people b/c they have a white family and they feel out of place in their white family b/c they are black. As much as we’d like that not to be the case there is always a noticeable difference in their mind and their perception of what goes through other people’s minds (some true and some not). I know that people care about me yet I know that I sort of stand out. I embarrass some family members and notice the questioning glances of some friends when I have my cane. They aren't quite ready to accept me this way. I just notice there is a difference between me and my sighted friends and family, and I notice a difference between me and my blind friends. To them I have a lot of sight and don’t understand them as well or identify the same. I just feel like I don’t fit. Bothers me more sometimes than it does at other times. I do have special friends that really enjoy trying to understand what I am learning and going through and that means a lot to me. I think I have this website for that reason. I really want people to “see” what I’m learning and love it when they show interest in this aspect of my life. I even have a friend that comes to the center regularly. That means a lot to me.


I noticed again how my visual field is affected. My blindness is so deceptive b/c your brain fills in the peripheral gaps with memory so you don’t really realize that you aren’t seeing what is there in real time. Rather it’s stored memory. My friend held up her hands for me to read and I noticed that as she held them up next to each other I had to actually look from one to the other and make her slow down in her counting (since we were trying to be extra quiet during the convention speech). I could not see them at the same time. I used to be able to count fingers on both hands without problem and know right away without having to process what I just saw. That is a small field. Hard to believe it’ll get significantly smaller. It was one of those “it hit me” moments. I couldn’t even blame it on poor lighting conditions.

Convention: attitudes discussed

I was actually quite surprised at convention when I found out how bad blindness is dismissed in the public school system. They don’t feel it is necessary for blind children to know how to read Braille or children partially blind losing vision are not taught how either. It doesn’t make sense to me why the school system excludes blindness as a handicap that is worth specific instruction. Listening to a tape or having someone read print to you is considered enough. The NFB have been fighting the lack of Braille literacy for a while now. I’m so surprised how much I didn’t know actually happened.

There’s a couple in Missouri that had their baby taken away at the hospital because the hospital social worker felt that two blind parents would not be able to take care of a baby. Blind people are more than capable and often develop tricks or methods to do things sighted people do without much difficulty. Bells on toddler shoes, really good baby proofing, hands and fingers to change diapers (which sighted people do anyways), etc.

I was so ignorant to the mentality that society has towards blind people and how extensively deep it went. It is considered the worst of disabilities to have and the most disabling (aside from quadriplegia). I agree that it’s awful to have but I know and have seen many blind people function better than a lot of sighted people do. And perhaps after getting used to it it isn’t so bad after awhile…you learn to use other senses to fully enjoy the world around you. Sight becomes less important. The hard part is dealing with a very sight based society and putting up with the notions that “you can’t do anything b/c you are blind.” I even had the notion as a partially blind person that total blindness would render me useless and incapable. I know that’s not true now and if anyone could overcome the challenges I know I could.
Even with deafness attached to it I know I’d find a way to overcome. It’s the social element that is hardest to deal with, and the limited freedoms (i.e. driving).

Convention

We are flying out tomorrow morning to Dallas TX to go to a week long convention. It's the yearly NFB convention (National Federation of the Blind). Over 3000 blind people are expected and I am not looking forward to it. So many people and so much activity. I've been given permission to go without sleep shades so it'll be nice just focusing on info gathering rather than spending time worrying about travelling amongst this ginormous crowd of craziness and busyness. I'll let you know how convention is going when I get the chance.

Rock Climbing

Went rock climbing again today. The creek near where we were climbing was very high today so it was very noisy and made hearing pretty difficult. I hate trying to walk on the trail near the river b/c all I can hear is the water and get really nervous. When I finally sat down on a rock to put on climbing shoes the guides left to do something and forgot about me for a LONG time. I just sat there wanting to go hunt someone down and get their help but it was too loud for me to even begin to figure out where to go to ask for help. Eventually I did get to climb on a rock and did fairly well. There were a few times when I was having little spats on the rock face with the wall. I really hate not seeing where to grab and I would take it out verbally on the rock. I did make it to the top and repelled down without too much trouble. I still expect too much of myself. Oh well, that is what has made me such a driven person I guess. You have to be in a "fast paced" world that doesn't view the disabled as equal. I had to make myself an equal and prove myself. SO now, even with something like rock climbing, I push myself so hard to be good at everything. (I gave up on being great with intersections though).

We also went on the Tyrolean (a zip line across the river). I'm not a big fan of fast moving deep water and hanging above the river went against my natural instincts. I had to pull myself across and then ride the line back across. I was fun actually. Pulling myself was no trouble, but the idea of jumping and throwing myself towards the river water on the way back was not sitting well. One of the guides said the look on my face was classic, like "Uh huh you want me to just throw myself over the river. Right!!! No-thanks!" But new things are always scary the first time.

Grilling

Ok so I learned how to grill with no vision today. Once again putting my body near a heat source I can't see if really nerve wracking! The trick is to use tongs to feel the grill and find your way around it. I grilled vegetables in an aluminum foil wrap. So it wasn't too hard to keep the veggies contained and the part I was most nervous about was the whole burning my hands thing. After learning to grill something today I still think I am more savvy with power tools than anything cooking related.

Speaking of which I did make my first error in wood shop today. Apparently when I raised the miter saw to cut some trim I didn't raise it high enough to clear the wood and as soon as I started the saw it grabbed the trim and chewed it up. Whoops! Fortunately we learn safe ways of cutting things so I wasn't in any danger from losing fingers and will probably never forget to raise the blade higher.

Evaluation

I took the day off to really spend time evaluating my progress in training and decide if I should continue with it. I sort of am on a plateau at the moment and I believe it has to do with attitude. Sometimes I am tired of being blind and would like to just go back to driving and living a normal life...but that's not going to happen. Then I decide that being around blind people reminds me too much of what I don't want to be. Although they are a great support network so the attitude doesn't make much sense. I guess it's all part of this cyclical grieving process I tend to do over and over again. I did decide that I do want to continue training b/c the skills really are helpful and I am trying to refocus myself on the program. Too many other distractions have caused me to divert from what I need to do while in the program.

During one of our philosophy classes some time ago we were discussing why driving is not such a big deal. Of course I had my hands folded across my chest and a very grumpy expression on my face. People were saying how nice it is not having to pay for insurance, gas, repairs, and parking, etc. So many folks thought driving was no big deal and could do without it. Finally I piped up and said "well I would have liked to have had the choice to drive or not to drive, rather than having no choice at all." No one said anything and It got quiet. Losing my driving rights has been very hard to deal with and makes me mad over and over again. Driving has a freedom associated with it and allows for transportation without having to "bug" others for rides all the time. I hate being a nuisance and being so needy for rides to get places where public transit doesn't go...like my church for instance. This has got to be the most difficult aspect to blindness, especially when I think I can still See a lot.

Practice

It's been awhile since I've updated. Had some rough days dealing with some emotional things. Some losses happen again and again and just when you think you'll get used to it you realize you never really will.

Well back to blind training, last week one of the things we did in travel was practice an intersection with a turn island. One of those things you have to cross to get to the actual intersection. The right turners use it to keep from having to wait for the light with the rest of traffic. As a blind person this type of an intersection is a monster. At least for me. First you have to know that there is one...usually the curb slowly turns rather than making a sharp corner. Then you have to line up with traffic at 45 degree angles instead of perpendicular or parallel like normal. When you cross you want to head towards traffic in order to hit the island. Actually making yourself move into the sound of traffic is a violation of all things common sense for me. But alas you arrive to safety (assuming you made the correct assumption in the first place, and there is actually a turn island). Then the rest of the intersection crossing is pretty normal like others. Of course normal for me is still not very good.

Rock Climbing Pics

A friend of mine at church took pics when our group @ the Colorado center for the blind went rock climbing. Keep in mind I am blindfolded and it was very cold. My hands were numb. As a blind rock climber you really have to feel the rock surface to find handholds and footholds, then you have to keep a good record in memory of handholds you can use for footholds. It's definitely a mental exercise as well as physical.


In these pics I'm on the rock...not the balayer (however you spell it).

Grocery shopping

For travel we were sent to the grocery store. Very interesting experience doing this blind. I'm grateful my travel instructor went with us b/c we had to cross an intersection and I veered. He hits my leg with his cane to keep me going in the correct direction. He really had to whack me a bunch of times b/c I kept trying to veer more. Anyways when you grocery shop blind you need the help of a shoppers assistant. A young gentleman helped us around the store and my instructor had us take turns using our canes and pulling the cart behind us. The assistant would say left or right and we'd steer the cart. I personally like hanging on the back of the cart and being led around...less mental work that way. So we had to rely on the assistant though to tell us pricing and where certain food items were and then we could touch and feel them to decide if that's what we wanted. Mark, one of the other students, knocked a rack of something over...so I had fun teasing him about that. I on the other hand did very well...but only for half the time. I bet if I had to navigate the same twisting path Mark did I would have knocked over a whole rack. It was a fun adventure.

Garden

Yesterday we planted vegetable seeds in the big community garden behind the center. OK first of all I have a "brown" thumb so we'll see if anything I planted actually grows. Second of all...I really wanted to be able to see what was around me and what I was doing. Blindfolds really bug me at times like these. I was in the center of the garden learning to feel where to put the seeds by the irrigation line based on where the tiny wet spots were. Even with sight it would be a valuable thing to be able to do.

tripped

I was zipping along in the hallway sweeping my cane in a pretty fast wide arc and all the sudden I felt it catch on something and I heard this thump. I totally tripped one of our volunteers and sent him sprawling. By this point I had taken my shades off and tried to help him. Of course he was pretending he was fine. I couldn't believe it. Felt so bad!!! He was a BIg man too and I totally took him out. Wow...I think I have a self defense weapon.

Travel

I have been working one on one with another travel instructor who knows a lot about the blind and deaf. He's been showing me other techniques that seem to be working much better for travel. If I ever do go totally blind I will likely be unable to cross major intersections on my own and need assistance from people. I really don't like the sound of that!!! Anyways, we practiced crossing an uncontrolled intersection (where the road we are crossing never stops). I had to indicate when I could hear traffic and after about 30 minutes of analysis we crossed. I have to say that when I cross these things I move FAST. No sense slowly sauntering across. The less time I am in the road the better! I enjoyed being successful for once though. Today we worked on more crossings and driveways. I think I'm getting the hang of regular travel with no intersections involved though. I trust my cane much more than I used to and can usually detect something with my cane before smacking into it. I did get lost in the middle of a field when trying to use the shortcut to go to the center. Oops!!!

I've been cooking some more food. Japanese rice noodle soup today and an egg dish on Monday. Forgot what it was called, but I'll probably never make it for me since it had milk and bread in it. I enjoyed successfully cooking though.

Outdoor day

My butt is really sore from slipping off a rock and smacking into it. Kinda ended up upside down. Not sure how that happened. Good thing for ropes. My balayer (no idea how to spell it) was letting rope out way to fast while I was repelling down and my footing slipped and well you can imagine the rest. I was more annoyed that I looked like an idiot than anything else. I wasn't in any real danger though...probably just seemed like ti b/c I couldn't see anything. After my successful rock climbing adventures last week everyone expected me to be this awesome climber and “rock the world” so to speak (no pun intended) …man talk about pressure. Instead of shrugging it off and just having fun I of course did what I always do and put the pressure ON. Always been way too competitive and expect too much out of myself. My fingers were numb from the cold and I had like no energy from being sick this week and yet I expected myself to perform at peak proficiency…even I can laugh at the stupidity of expecting that. It didn’t help that someone who knew me was there and I really didn’t want to come across as a totally incapable climber. I’m sure you can imagine how horrible I was to myself as a gymnast if I was like this after only 1 day rock climbing. Hey I have way too many physical flaws and have to prove that they are not limitations and I CAN DO ANYTHING!!! I know that’s not really true but this is the tape playing through my mind….old habits die hard!

Let's see: I also got tangled in a tree sticking out of a rock…kinda humorous actually. I was ready to chain saw it off after the little wrestling match on the rock face. Ha!!! Well despite how hard I was on myself I still ended up really enjoying the day. We went hiking afterwards and I really am starting to pick up on hiking blind. It is way easier than intersections and the sheer drop offs next to you sometimes are never even noticed until someone mentions it…then I would hug the other side of the trail. Following a trail is actually tactilely very easy to do. It’s the only area on the trail that is packed down and isn’t too wide so my cane can get most of it in one sweeping motion. I find it interesting though how when I was allowed to take my sleep shades off to look at the view I had a totally different perception of what I would see in my mind than what I actually did see. I was picturing trees, underbrush, lots of green stuff, and a full on rain forest type setting like we have in Washington state. Ummm hello I quickly realized that we were in Colorado not Washington. It was still very beautiful and expansive. I could see a climber on one of the canyon walls and now I want to do that too someday. Anyways after being able to see my surroundings I all the sudden was psychologically unable to “hike” without vision. I kept thinking I had to see what I was doing…despite the fact that I had hiked all the way up to the spot without vision…and in the lead. I could not stand being a follower while hiking. I hate hitting the person in front of me with my cane and being unable to feel the whole trail…and walking with a bunch of blind people can be really really annoyingly slow and tangling to say the least.

Overall I thoroughly enjoyed myself today.

Chng in travel plans

Looks like I've been having a hard enough time with travel and my hearing loss that things are going to be done differently with me. I've had so many close calls! I have never had to contend with something that I absolutely could not do somehow and now I am looking at this beast straight in the face and wondering how on Earth I am going to function normally. All I can say is I better be one of those lucky few that don't lose absolutely all of my vision or else I'm screwed. Well perhaps that a strong way to put it...but I definitely have more challenges than the average blind person faces b/c of the hearing (or lack thereof). I was really hoping that the hearing thing would be a learned process that I would figure out how to get around...but almost getting creamed by moving vehicles in an attempt to figure that out isn't really working out.

It's so frustrating for me to be capable of studying doctoral level physics and teaching calculus and yet be unable to cross a frigging street. Well I suppose I could think about Stephen Hawkins in this case. He had it worse. Way more brains and much less mobility than I. Hummm somehow that is supposed to make me feel better....well how about a bowl of ice cream!!! With lots of chocolate!!!

Rock Climbing

Today was amazing. I absolutely loved it. A group of us went rock climbing (all blind) in the mountains near Golden CO. It's been years since I did a little bit of it in a rock climbing gym and never in the real outdoors. Certainly not without sight. I went second on the medium difficult rock and had so much fun. I couldn't see the rock and yet I was able to develop a way of feeling the rock and becoming "intimate" ith it if you will. It was challenging and hard but I totally soaked up all the praise from everyone and loved hearing "she's a natural", "look at those moves ...she's so flexible", "wow I am amazed", "girl you're a beast", etc. The rock climbing guides absolutely loved me and wanted to see what I was capable of beyond that and took me onto a very difficult rock b/c it has such a smooth surface with hardly any hand holds or foot holds. It was hard to climb and there were several times I had to literally pull my whole body weight up by my arms to grab at a ledge or small crack I couldn't even see. I did it and I am ecstatic.

It felt like I could do anything with or without vision. I had a number of scraps, bruises, gashes and such but to me they are like a badge of honor.

We also went on a nature trail hike afterwards under blindfold. I was walking pretty fast and feeling all confident but kept gravitating to the river b/c it sounds like water is running all around me with my hearing loss. Brenda would stand between me and the river so I wouldn't end up swimming. It was enjoyable and I could smell the trees, feel the ground, and didn't feel all that blind even though I couldn't See.

On the way back to the van me and Brenda were trying to help each other up a hill and were stumbling all over each other. Such blind grace. HAHA ...I thought it was hilarious...except perhaps the part where as soon as I got up off the hill I smacked into a pole and gashed my nose. Now I'll look like Rudolf. Small price to pay for such an awesome day.

I needed a day like today...it's been a rough few weeks for me and this was like medicine for the soul. Boy I am such a sap!!!

Today was a weir day. I had some very strong migraine medicine in my system and boy I was messed up. My equilibrium was messed up and I fell down the stairs. No injuries. Then I fell over on the train. Gosh you would think I was drunk. Slurred speech, smacking in to walls, not remembering how to sign my name...geesh!! But at least I didn't have a migraine.

Tonight after the effects wore mostly off I decided that I needed more intersection practice and went to Platte Canyon and Mineral ave. Fairly sizable and a predictable traffic pattern. Well the first section I did fine...yeah. The second I did ok also. The third was bad though. I thought I was lined up and then crossed. When I checked with my sight I saw that I had crossed diagonally across both busy roads. Holly cow. Guess it wasn't too busy when I crossed. Everyone must have stopped. They each have four lanes...so the hypotenuse would be about 5.6 lanes. Ok once I got over the stupidity of that crossing I proceeded to go back the other way and get to a turn island. I crossed when I thought it was time to go and hit something in the middle of the road...a median. I must have veered so much that I hit it. Then some pedestrian came running and told me I just about got creamed by a car. HUH??? How close? Well he had to put on the breaks hard and stop. Nice to know people stop for us with walking sticks. And we don't get honked at either for it. Then I crossed the three sides to get back to where I was originally. Walked into two cars twice and had to bump around them and continue to walk across the intersection. But I made it alive...but not much better than that. I need way more practice.

Off roading

Travel was a lot of fun on Friday. We went off roading. Took a trail off a road and hugged a giant tree that three of us didn't fit around. We went through a grassy field and followed a trail that would disappear in the tall grass every so often. Eventually we came to a hill that dropped off in front of us. At first we weren't sure what to do. But we decided to stick our canes down the hill and follow them sideways. I had a blast being all daring and sliding down a hill without sight. We found our way back to the center on another trail. Did take a while to find though in that grassy hilly field area. It made for a nice adventurous detour from regular travel.

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.

Great Day

Today went very well...and to think it was all b/c I didn't allow myself to peak at all and thus my confidence level went up. Made gluten free mini muffins, did a whole bunch o dishes, read lots o braille, and learned to navigate facebook.com on the computer. My kids came to visit and I cut up and apple for them along with heating up some meat I made in the microwave. I can actually read the braille letters on the microwave. SO exciting!!! It's becoming practical and useful now. The kids had fun and were as wild as usual. Abby made comments like "I'm getting used to people and things around here." So silly!!! Travel went well. I felt like I was figuring out my cardinal directions better (N, E, S, W) and keeping better track of it as I travelled. We were travelling in a neighborhood and some dogs got really mad at us and were very ferocious sounding. It didn't bother me until a tree branch bumped my shoulder and I startled thinking a dog jumped the fence to land on me and attack. Wow quick adrenaline rush. Good thing I figured out quickly that it was a tree.

If anything I noticed that by conscientiously forcing myself not to peek I saw that I really could do it and my confidence was much higher. Hummm wonder what the moral of the story is!!!!!

Woodshop

Today went well in woodshop. I learned how to use the router table ane made dado cuts. I got to make the cuts while he was on the other side of the room. Doing the math calculations really hurt the brain though. Keeping track of all the numberd in your head is challenging. I enjoyed myself.

Personal struggles

Today was another reflective day for me. I have been struggling with myself. I sort of feel like I've hit a wall temporarily. I've been going full speed ahead and I almost need to just sit back and be okay with slowing way down and spending time evaluating myself. Going through these life changes are very difficult. I'd like to be able to go from room to room without having to think so hard about how to do it. So tiring!!! The only break I get is when I'm sleeping. I already spent a lot of brain power interpreting what I hear...now I have to interpret what I don't see. Could we not have a worse combination of disabilities!!! I had one of my counseling session and we discussed something I thought was very insightful. If I could just take it one day at a time I would probably find things to be less stressful. I've always been a planner and it's stressing me out. I can only see the big picture and it looks so daunting and overwhelming. I can not see how I will survive...but I know I will. I just have to look at it one day at a time. We also discussed how people with significant trauma in their lives tend to be overwhelmed by uncertainty. Someone in a major car accident may wake up at times after recovery unable to go without being terrified of what is going to happen to them on a given day. Fear is a key word. Well in my case this disease has so much uncertainty with it and I seem to be stuck in this giant land of limbo. I am too blind to do such activities as drive or walk casually and uneventfully through a store without the need of a cane. Yet I am not yet totally blind so I don't quite fit in there as well. It's a very disturbing sense to feel like I don't quite fit and I'm not sure what I can do about it. I'm also terrified that I don't know what my future holds. I'm trying to prepare the best I can but I don't know how to plan for it. Will I be total next year, or in 10. Will I be able to do graduate school? Can I be a mom? Is my hearing going to drop too? I have a hard enough time with the hearing I have and being unable to read lips anymore. I can't lose what I have. I am really afraid of what I may have to face in that department. It seems like I am living like I have been traumatized by this...and in a way I have. It's such a drastic alteration to life as I knew it. It's frightening and I have no control of it.

OK enough reflecting. So far I am now in grade 2 braille. Grade one includes the alphabet, and all punctuation. Grade 2 is when contractions come along. Fun but so much to learn. For example the letter c by itself means can. There are symbols for parts of words, like: ed, ing, ch, and others. There are symbols for words like and, of, with, and others. It shortens how much you have to read and makes everything fit better onto pages, but it's a lot to learn. I don't know how I am going to remember all of them. I have also been learning how to read and track the lines. They feel so close together that moving from line to line often ends with me missing lines, returning to previous lines, or completely lost somehow. Wheew...lots of stuff to know.

Royalty

I went to the shopping mall with my daughter Abby in order to get my braille watch re sized. I didn't take my cane with me (which wasn't smart considering how many objects I about ran into). Anyways I noticed that as I approached a door to go into the building someone was coming out. I'm so used to people noticing me and holding the door, opening the door, and doing everything to be helpful. This time I had no identifier and the person let the door shut. I had to screech to a stop to keep from running into it. I guess I've been getting used to be treated like royalty. LOL!!! My friend would say it serves me right for not taking my cane with me. I make so many little mistakes without my cane and people just go around thinking I'm so rude and glare at me. I make almost as many mistakes with my cane, but at least people look at me and think "oh she's just blind!" It does make me laugh though. Guess I had a little mini lesson on that one.

Drywalling

Today I spent time drywalling a stairwell and brought a friend of mine from the Colorado center of the blind. She is totally blind but very interested in learning how to do as much as she can. I decided to teach her how to drywall and she was very excited. I am attaching a video of me teaching her to feel where to score the drywall so that we can hang it up. We hung two sides of the stairwell and will finish taping and mudding another day.

Another Graduation

Another student graduated from the center. He is from Ethiopia and his story is a touching one. He was blinded by tree sap when he was a child and then he was used as a beggar in the city for some opportunist man. He was able to escape and survived blind for many years before some missionaries found him and got him into our program at the Colorado Center for the Blind. I may not have his story entirely correct but I know his story is a remarkable one. Most of us in this program have very touching remarkable stories of enduring hardship and overcoming obstacles. It is sad to see people go but it is good to have them go out into the world as independent blind adults capable of doing whatever they put their minds too. I am very fortunate to have met these strong and courageous individuals.

I know my story is not an easy one and yet it is who I am. I would not be the same strong determined and ambitious woman if I hadn't faced these hardships all my life. Perhaps we are living proof that when the bible says "Perseverance under trials builds character and strength," it was right. (Of course that verse is very paraphrased). :-) At the same time I can say I would have preferred not to have gone through all this crap, but it is what it is.

"There are days when I hate everything about being blind and there are others when it seems do-able and okay to live with." This is something one of my friends recently said and I would say sums up what I am facing. Some days I feel so confident and ready to accept this and then other days I wish I could throw everything I own off some roof. I definitely experience so many raw emotions when it comes to this. It seems that one day will be fine and then one little disappointment or experience will set me off. Being blind is a very scary prospect, especially with hearing loss on top of it. When I am under sleep shades I notice that my level of understanding communication is hard, especially the more conversations and noise you add to a situation. I still find myself feeling like this is all so unreal and find it hard to believe that I am actually losing my vision. Some days I am just so tired and exhausted dealing with my life. It feels so hard and unfair. Then other days I completely shut off my feelings and ignore the obvious about what I am going through.

I struggle with how obvious my impairment is, and how much I have to rely on others. I've always been more independent and now even that is being taken away. I spend so much time feeling so bad for putting others out when I need help with something, like shopping. I don't like how it feels when I can't get my needs met by myself and I have to rely on someone else. It's hard and I know it will only increase more so as I lose more and more of my vision.

OK now that I have spent all this time talking about my sad feelings I have some good news. I got to take today off because it snowed too much. The center was closed for the day. It was a much needed break!!!

Today was a crazy adventure for me. A tad stressful. I forgot my purse on the train (another reason why fanny packs are more convenient) and a good friend of mine took me from the center to downtown Denver to go get it. Later on in the day we had the fire alarm go off. We all had to find our way outside and stand in the cold rain. Something caught on fire and was smoking a lot in the kitchen apparently. Guess fire alarms are a regular occurrence for us. I remember the one we had a few weeks ago when my hearing aids were plugged into the computer so I never heard the alarm. Everyone was ushered out and then my instructor realized I was still in the lab. She now knows to tap on me and alert me to get off the neck loop that connects me to the computer.

Vision and Hearing simulator

This is cool. It's a vision and hearing simulator. You can see what it's like for me. Just click on the buttons to the right on the screen that say vision simulator or hearing simulator...PLay around with the simulator. It'll give you a good idea of what I live with. The simulators or on selectable tabs towards the top of the page.

http://www-edc.eng.cam.ac.uk/betterdesign/downloads/impairmentsims/


my eye disease is called retinitis pigmentosa and I have the mild hearing loss with hearing aids and severe without hearing aids....actually to hear the normal mode I had to turn the volume all the way up. ;-/
What you'll notice is a "charlie brown's mom's voice" quality to what I hear. That is how I've always described it.

Keep in mind that the black dark regions that are blocked out are really just a hazy white or non existent. They aren't really black...how to draw in non existence.
At night though my vision does look black...and in low light just look at the picture and make everything really dark in your mind. Only a few things show up...

Info on RP and Ushers

Some info I compiled from online about Retinitis Pigmentosa (the vision portion of my disease):




What kind of vision do people have who have retinitis pigmentosa?

People who have retinitis pigmentosa see things from the center of their eyes. They may see details in good light. They have trouble seeing anything in dim light. They may not notice things moving to the side. They may bump into things or trip on things. They do not see things to the side or down below or up above. Sometimes they feel like they are looking through a tube or a tunnel. People call this “tunnel vision.” It may take longer for people who have retinitis pigmentosa to see again when they go from bright light to dim light or from dim light to bright light. Persons with retinitis pigmentosa can be disturbed by photophobia. Light falling directly into the eyes causes dazzle. Light coloured surfaces may also reflect enough to disturb vision. Decreased contrast sensitivity is a common feature of retinitis pigmentosa and several other eye diseases. It means that the person does not see faint shadows, (s)he needs high contrast in order to see.

My comments:
This is why I no longer can drive. My field has narrowed significantly and I wasn't noticing things happening around me.
My vision is continuously deteriorating so I am in training to prepare for the eventual lose of most of my useful sight.
I see pieces of people instead of all of them. This goes for other objects as well.
I see blinding light in clear strong sunlight.
I see nothing in the dark. No shadows.

Ushers interview:
Here's a link for an interview on the Today Show about a woman with Ushers syndrome. She's very much like me and says a lot of insightful things. She has the same fears and talks about them very well. It's a very informative video that will help you see what it's like from my perspective.

http://today.msnbc.msn.com/id/26184891/vp/29741456#29790193
click on the video called "facing a rare disorder with courage." There's another one called "It's like slowly being taken from this world."

Perspectives and links

I found another blog where someone posted the following about Ushers:

"To most it's the stuff of nightmares; as one father wrote on his blog after reading about the condition while researching what might have caused his son's deafness: 'Usher syndrome gave me the experience that the cliche calls 'chilled to the marrow'. It's a cold start, a real glimpse of horror.'"

It's an interesting perspective. I'm not sure I would say that I am chilled to the bone by my genetic condition. I mean I have it and I'm learning to live with it. The process of losing my eyesight and possibly more of my hearing is not fun and I wouldn't wish it on anyone, but it's my life. It's my reality. It's not that bad. The part that is hard for me to deal with is the fact that I am limited because I can't drive. I want to go to grad school for my Ph-D but I'm not sure I will be able to because I have no transportation. I have applied and we'll see what happens, but will I be able to accept the position? I absolutely abhor the limitations placed on my by Ushers syndrome but not the disease itself.

It is scarey and most people can't fathom what it is like to have a dual sensory loss. But the part that they really can't understand is the limitations put on me by a world that does not accept the disabled very easily. I am capable of doing many things but I am not able because in a world that relies on mobility I don't fit. Of course I am working on changing that for myself.

Another woodshop video

Another day

Today kinda started out bad and I had a pretty sour attitude but as it progressed I shaped up. I suppose that I am human too and can have bad moments just like everyone else. I am working on being gentler with myself. It's ok if I don't get everything right away. For Pete's sakes reading braille with your fingers is a whole different ball game than doing math or something for me. It's ok to be patient with me. Now hopefully I can put that into practice b/c I have been way to hard on myself.

Travel is usually the class lately that I don't like and am nervous about, but today went much better. We did a route that wasn't super taxing so I could be a little more explorative and work on a few techniques I have trouble with. I felt much more confident after today than I have in a long time with my cane travel skills. I even forced myself not to cheat when I thought I was going to be hit by a car. Reality was I was stuck in the bus loop, not the street. Hard to tell when you can't see your surroundings. Since I was hollering and being whinny about it my instructor chose to ignore me and then came over to get me when a bus was coming. He was like "I am not going to deal with any yelling. I will just ignore you unless you are in real danger." Good thing I'm sure. We talked over how I could better figure things out rather than throwing my hands up (with cane attached) and yelling "where am I?" for the whole world to hear. Man he has a lot to put up with with me as his student. I definitely make him earn his paycheck. LOL!!!

Woodshop video

I had videos taken during woodshop. I am cutting out the base for my trivet project. I am not a big fan of table saws but the way my instructor has taught me to be safe with them leaves me less afraid of the saw. It was always the one saw I hated in my remodeling and woodworking adventures as a sighted person. Now it's not so bad even without sight. The blade can only be an eight above your cutting surface and a push block is very important so your hand doesn't go into the blade. My instructor is spotting me so that the piece will stay straight. The second video is the mental prep that went into bravely cutting something without seeing. I did well handling my nerves!!! LOL!!!

Ok can I complain a little?

I have to say I am so irritated with this so called thing called "clicks." I know this isn't a blindness issue and that everyone else probably feels the same way as I, but do clicks have to exist everywhere I go. Schools, churches, work, and now even at the Colorado Center for the Blind. It's so annoying how a few people have adopted this "I'm too cool and good for you" attitude. Oh please...is this high school. Apparently so!!! Well considering most of them just got out of high school with the exception of one that is applying for a doctoral program. Actually they are generally nice alone but in the group setting they are kinda snobbish. What am I? Dog food!!! It shouldn't bother me so much but I really wish I didn't have to deal with this attitude thingy going on while learning to figure out my new life. Well I'm not a cool person b/c I'm a nerdy mathematician that knows PI to ten decimal places....well in that case WHO CARES!!! I like being a nerdy mathematician that likes such bizarre things like science. LOL!!!
I know it bothers a lot of other students that they are shunned from this group, but I find that the "shunned" students have such amazing character and class anyways. I have become good friends with a number of them and wouldn't trade that with some "cool" classification that will die off anyways. These are friendships that have shown me some valuable insight into myself and life in general. We all seem to try taking a more positive worldview despite our struggles. We all have such strength as we push through what we are standing up against.

We all go through our tears of sorrow and frustration, but in the end we are still standing, and that is what counts!!!

As hard as it is I don't think I would trade who I am or who I have become or even these difficult experiences, b/c it has made me stronger. I have a feeling God knows what he is doing!!! [I may not agree with these words all the time but for the most part I think I do.]

Graduation

One of my close friends graduated today. Even though we only knew each other for a month we had a good time around each other. I really enjoyed her company. Anyways she finished her big meal for 50 that is done on graduation day. Also finished her mega monster route early this week. It's a trip we have to plan out and make for a day that involves four city locations to visit, catching all of the transit required for it, and meeting everyone at a restaurant of choice. She picked the Ave. Grill in Denver. It was pretty stressful but she did it. Also to graduate we are required to do complete a project in technology, organizational skills, a 30 page braille recipe book for home management, a mini meal for 15, a woodworking project, a braille project, the monster route for travel, a support drop in the middle of the city, a drop alone in the city, and then our final meal for 50. I am most nervous about the drops. We are dropped somewhere, can only ask one question, and need to find our way back to the center.

This program is definitely a very intense training program and requires a lot out of us. It's very good for me to have high expectations placed on me in order to be prepared to do anything I put my mind too as a blind person. Going to graduate school for a doctorate in Biophysics will demand a lot, even more as a blind person. I know I can handle the academics behind it, but I will also know that I can handle the affects blindness will have on me as well. It's a confidence building program, but it can also feel discouraging as we are muddling our way through. We just can't give up b/c we can do it. I know that given what I have faced in my life as a hearing impaired individual and, overcome, I can now do the same thing with blindness.

Good Luck out in the world Shelby! I will treasure our time together!!!!

Day at the Capitol

What a stressful day! We had to go to the capitol in Denver and meet with representatives about certain blind issues and a bill we want to have passed. B/c of budget cuts we wanted to make sure funding for our programs wasn't dropped. The main funding program was a blind phone service so we can get newspapers and magazines read to us. We also wanted to make sure we could get copyrighted access so the blind people can read copyrighted materials and have equal access. The bill HB-1152 is important b/c it raised fines for discrimination and harm occurring to guide dogs, etc. Right now the fines are so low they aren't acting as much of a deterrent to keep these kinds of things from happening.

So anyways I had such a hard time in this HUGE maze of a marble building. Sound bounces off of marble and made it impossible for me to localize sound. I had to hang onto a fellow student which is a no no. There was an exception made for me b/c I could not hear enough to follow the group. It's all a giant maze and sound is everywhere. I swear that building is like 80% marble pillars and then tiny walkways. I was not sighted the whole time b/c it was way to much for me to handle. I would say I was definitely overtaxed. It's so discouraging and I wonder if I will ever be able to overcome the hearing issue with my blindness.

Today

I had a very good friend of mine visit the center today, so I got to give her a tour. It was fun showing her what I do everyday and show off some of my limited skills. :-) I definitely enjoyed having her there.

Later on I had to do another independent trip to Oxford station where I have never been. This panicked me and I cheated so much. It's like I would be standing and had to check that I really was on solid ground. How dumb is that!!! Well when you start to panic all sense and logic flies out the window. I was so unsure of my cane and didn't know what to do with myself. After I started heading back I ran into my instructor and told him I was mad at him for sending me out by myself. I really felt like I couldn't do it and was not ready. Sounds freaked me out and I was so unsteady. If I had stayed calm I might have been able to do it, but I really don't feel like I know the art of observation enough to determine what I am doing or where I need to go. I was also panicked about ending up on the tracks like Jeff did. I think it was too much of a stretch just yet and left me so very very discouraged and upset with myself. It's one thing to anticipate what you know is present b/c you've been there before. It's an entirely different matter to figure it all out from scratch and not even know the layout of the place.

This weekend

I went to a church last night called The Scum of the Earth. I had to go just to see what the name was all about. Anyways there were a group of us from the center that went. 4 of us came back early rather than going out to eat and were waiting for the 10:15 pm bus. The time came and went and No Bus showed. I called Matt to see if the schedule was different. Well apparently Sundays are limited. Our last bus was at 7:50 pm. We had to walk the mile and a half home. It was fun trying to navigate it together. Good practice and I did enjoy the time with friends. But the scary part was before we got to the bus station. We were walking to the light rail waiting zone and Jeff, one of the newer students that has Ushers like me was confused and fell off the platform onto the light rail tracks. Fortunately I could see a little b/c of the lighting at the station and went running onto the tracks to get him off before the train came. He was so disoriented and it took longer than I would have liked to get him off the tracks. Then a train came within a minute of all that. Poor guy! It freaked us all out and I was the only one sighted enough to see what happened to know he was on the tracks. After that ordeal was over with and all adrenaline settled we than had a long walk home in the cold, but it was still enjoyable (not the train track part but the walking part).

PBS Documentary

I saw a preview on the web about the PBS documentary "The eyes of me" about 4 blind teenagers. I'm not sure why but it rubbed me wrong. To be fair I only saw the preview and not the documentary so it might not come across how I perceived it would. The students in the film looked scary, timid, unstable, and cognitively deficient (I nice way of putting it). I don't like the idea of creating or further enhancing the idea that blind people are helpless, in need of pity, and sort of incapable. There are many of us that are very strong in personality, that carry ourselves professionally, that are intelligent, and that can do whatever we put our minds too. The film preview seemed to show a number of mannerisms (or blindisms as we call it) that do not make us as blind people come across very well socially. Even we discuss the problems with certain blindisms so as to not develop them.

It's just that I have made it so far in life and have overcome so many difficulties and the fact that this disability is so out in the open bothers me. I hate that when someone sees my cane they automatically make certain assumptions. I'm afraid this documentary only helps to further those assumptions. I train with some very neat blind people that can do anything and I also train with individuals that have issues socially. It's just part of the mix. I just don't like being categorized so quickly in people's minds.

Travel route

Today I have a math conference so I will be taking a break from training blindfolded. Yesterday I was sent on my first independent route from the center to the light rail, up to Evans station, and back to the center. I had to go ask a bus driver where he was headed and then turn around and come back. He thought I was a bit strange to go al that way and then turn around and leave. "Uh Mam aren't you getting on the bus?" "Nope I am just on assignment and am heading back now." "Uh ok!"
A lady at the station thought I was lost...and technically since I was blind I was lost but not in the way she thought I was. "I saw you going that way and now you are back!" "Well I'm on assignment and can go back now!" I did nicely explain it to her since I had time while waiting for the light rail. I peeked a few times b/c I was nervous. The temptation is so high....as my friend likes to put it "The Adversary is tempting me!" LOL!!! Anyways I made it back to the center and Robert at the front desk was like "how'd it go?" I disappointingly told him I cheated. He went ahead and announced over the intercom that I did my first independent. After that he told me that I would learn more skills so I wouldn't feel the need to cheat later on. Hummm I said I liked his perspective better than mine.

No fingers chopped

WOW it was exciting today. I got to use the miter saw and table saw. Yes I was blind!!! We are actually very safe b/c the techniques we use keeps us from getting to close to the blades. They are techniques even sighted people should use...and most do. We have to properly set the blades and use a click rule to do so...very accurate. We can have a table saw blade more than 1/8 higher than our wood stock we are cutting. We also use push blocks so as to stay away from the blade. Our sense of awareness needs to be sharp (and it sure is when that kind of noise is turned on). Our hands must also stay in place and not move, except to push the push block. The miter saw was interesting. It was actually a sliding miter. I had to pull it towards me, push down on the cut, push back, and then raise it. Allows for cutting of wider boards. So fun!!! Next week I might be doing the angle cuts. Ohhh dangerous sounding. I am having fun with this if you can't tell.

I have to laugh

I am going to laugh at myself about this. I was commenting to a friend of mine that I thought it was funny how when my blind friend was talking with someone at church on Sunday there was a lot of head nodding motions by the sighted person. My blind friend could not see them. Then I caught myself doing the same thing. Not only that but I was under sleep shades myself. LIKE DUH!!! Actually this has happened a number of times. I raised my hand once and realized that wouldn't work so I just called out my name like we are supposed to. Then once I asked a guy that has been total a majority of his life "Why does your cane have blue on top and the others have green." He was like "huh. I just have whatever cane they give me. Who cares about color." Dumb question!!! Well if we can't laugh at ourselves then what can we do.

Cooking

Tonight went well. My friend Kristen and I went to my house and had Matt and the kids, my mom and her boyfriend and us for dinner. I made gluten free chicken Parmesan that was fabulously good and a pecan pie that was gluten and dairy free. I did the whole thing under blindfold. It was very good practice and did take 3 hours to make everything, but it all turned out well. Everything was from scratch and tasted good. I even was ok with sticking my fingers into the fryer to flip the chicken. No burnt fingers or food. :-)

Last day of Skiing

Today was my last day of snow skiing with the program. I really enjoyed it and was determined to make it the entire day without peeking. Yeah I made it!! Went on a few blue runs and practiced turns on command, etc. I did so much better today and felt very confident under direction. A few tricks my guide played on me included handing me the ski poles upside down to see if I'd notice. I was trying to push in the snow and said "This isn't looking right!" I was trying to hold the bottom of the poles and the top was sliding in the snow. No grip. LOL!! He got a laugh out of that one. Apparently he was able to successfully ski me around a few downed skiers, a class of kids, and some wild snowboarders. He still was very safe but felt confident in my response times. Had to laugh b/c at one point he said "now we will have to make a very hard right." I literally turned an entire sharp turn 180 degrees and he was like "Go figures." I turn way more than students he's used to and it didn't surprise him how sharp it was. Of course it made me go uphill and I had to keep from sliding backwards.

At one point today we were standing on the side of the hill waiting for a safe clearance for me to go and some lady went careening out of control and went right towards us shouting "Look out!" After she came to a skidding stop by him he was like "Lookout doesn't work with the blind!" I didn't even know she was coming until she whizzed right next to me. He said about 1 foot distance between her and I. Guess I came close to getting taken out. She was kinda expecting me to move out of the way for her and didn't see the blind skier vest I had. Oops!! Poor thing felt bad especially after the comment my guide made. Glad my hearing isn't so good. At least I had no idea what was coming towards me and never freaked out.

I noticed a change in some of my directional issues. When I was starting to slide backwards I started to notice and actually correct by moving my skis in the downhill direction so that I was perpendicular to the slope. This is something I have had trouble with identifying. I would be going backwards and not realize it or know what to do about it. Perhaps there is some hope for this directionally challenged blind woman :-). Maybe I will eventually be able to tell what my orientation is while traveling or skiing.
I really thoroughly enjoyed my day out...the air was warm and sunny (of course I couldn't see it) but I felt it. :-)

Thursday

So I had to go on a travel route to a place called Beyond Sight to look for vision aids (digital recorder to take notes, watch, etc.) to use while training. Took a long time. Anyways Jen my tech instructor went with me. I veered into the road and when I couldn't find the curb I was tempted to peek and saw that I was walking in the middle of the road and all the cars were stopped hoping not to hit me. Whoops! After the store on our way back to the bus stop I got tripped up and Jens wheelchair ran over my foot (no it didn't hurt). When I moved my foot her wheelchair began to tip and I freaked out and tried to grab her. Can you just picture what all the drivers in their cars were thinking and us two blind folks were getting all tangled up in the middle of the crosswalk. Luckily we were able to keep her from tipping over. Then when we were almost at the bus stop I crossed a driveway as a huge truck was bearing down. Jen likes teasing me that I almost got taken out by a huge dump truck. Luckily the driver could see and stopped for me as I was floundering all over the place trying to get out of his way.

What a day!!!

On the bus I was trying to find the steps to get on and couldn't seem to figure it out. A lady can out of her seat, came over to me, and grabbed my arms. For some reason she thought pulling me up was helpful. My arms were way above my head since she was above me on the top step and my cane wasn't usable that high off the ground. In that position I couldn't use my cane to get up the steps and was tripping all over the place. I did thank her anyways b/c I know she was just trying to be helpful. It really wasn't helpful at all.

I'm getting used to looking like an idiot in public. Nice and humbling!!!

Another challenge

Another challenge for you! Next time you cook and are putting your ingredients together practice under blindfold or with something else covering your eyes. Try to pay attention to pouring and how it works and practice putting together your ingredients. If you don't want to ruin a recipe then just do an experiment with flour and water. Practice pouring water into a measuring cup (we don't use the liquid measuring cups) and practice scooping flour into a measuring cup as well. Try some different techniques and get a feel for how you would know if your hand is level and when the cup is full. Leave comments if you like so everyone can get an idea for what people feel and think about it.

Am I so Scary?

So why is it that people are so afraid of me? I don't bite! On Sunday night we had a shopper's assistant at the grocery store and since I could still see I saw very clearly that the assistant was terrified of us. Am I really that scary? Then I noticed that when we came on the train yesterday morning a few people quickly got up and left even after we sat down. It's like we start a panic. I remember being self conscientious around blind people before and would act silly and was unsure what to do but I never really ran off or freaked out....or did I? Uggg I hate being on the receiving end of someone's fear. I was on a travel route yesterday and had problems finding the bridge and some guy came up and grabbed my hand and yanked me towards the bridge. I know he was trying to help so I am trying not to be miffed about it, but it seemed really rude how he yanked me around. Can there be a happy medium? I'm not stupid like the blindness makes me look. Being hearing impaired suited me better....I could hide it. The stick is really hard to hide. I really hate having my disability so out in the open. Now people see me and their first impression is dumb blind girl or pity. I really am capable and strong. Yeah it really sucks I'm blind but that doesn't mean my mind is blind to the things happening around me. I can see why the blind become so bitter about sighted people. I am determined not to be and so I have to work through these things. There are so many nice people out there and they genuinely care...and then there are some rude jerks. I need to make sure that line doesn't become to fuzzy for me. I do not want to be a bitter blind person towards people. My outgoing friendly personality is part of what makes me who I am.

Snow Skiing

I was so excited to get up to the mountain and told my guide "let's go to the big mountain." We got over there and took the lift up and began our run. Let's just say with no vision I sucked royally. I was so upset with myself and couldn't figure out what was wrong with me. I could not make turns, I kept sliding backwards without realizing I was moving, and all in all I did awful. We decided to come back to the little mountain (as I call it) after lunch. One of the video guys that was video taping me for some analysis program they are doing came up to me and said he knew why I was having such trouble. The powder was fresh and creates a gliding sensation. I literally could not get a feel for my ground and orientation b/c I was gliding on this stuff. Great stuff to ski on if your sighted but horrible in my case. We went back to more familiar runs that I did the week before and I had to start working on techniques for handling the powder. I soon got the right idea and was figuring it out. I feel much better after this afternoon and finding out that mt skiing was so bad b/c of something else I wasn't familiar with helped. He let me do a few runs with my shades off so I could see and I basically ripped down them, but the key word is SIGHT really helps. Oh well I need to learn to figure out how to work with vision loss so I'm ready when it is gone.
My guide was telling me that the trouble he has with me is opposite what he has with other skiers b/c I can ski well with sight and when I turn on his commands they are very sharp turns. He's like "I can't believe I actually have to tell someone to turn less." I had fun teasing him by hockey stopping and spraying snow at him. I got him good a few times. Turning is hard while blind b/c I have no idea how much of a turn I have made. Without visual clues you have less sense of the turn amount. I would compensate by turning very sharp causing me to stop a lot. [sigh] I'll get the hang of it and hopefully the big mountain won't have fresh powder next time.