Wednesday, June 13, 2012
Walk softly and carry a big stick
Well, I did it. I finally broke down and got a cane. It has been a long time in coming and a mental fight within myself for some years now. And here is how the story goes.
Once we closed our restaurant and began focusing on grad school, I came to the realization that in order for me to be independent, i was going to have to one day suck it up and take the plunge to the land of letting people know i am one without sight. After coming to that conclusion, I psyched myself up for about two months before finally calling my state's rehabilitatio department. This was in November. They told me they had a program where i would learn mobility and that I would probably be able to participate in the spring. It was a bit to wait but we had other things going on and and so I waited. and waited. and waited. Well it is june now, and I am no closer to my training as I was back in November. Finally last month, I had had enough. I began researching online and found that the items weren't that expensive. I had already taught myself an understanding of braille in only a few weeks (i can read it, just not quickly) with no help from anyone other my state or any clases, so i fifigured, how hard can it be to learn how to swing a stick back and forth?
After researching how to measure for length, my husband and I went online and found a suitable length with the features i wanted.
We ordered from the company Maxi Aids (seems to be a pretty good company, I got my braille slate from there and their prices are decent). We just looked it up on amazon. The price was only $20 + about $7 in shipping. Definitely worth it to me instead of wasting my precious time playing the waiting game with my state.
The cane is 54" tall (you measure up to your shoulder to get the correct height). It folds to about 1.5 feet long (I haven't actually measured the length folded, that's just my guesstimation), and reminds me alot of a tent post in the way it comes apart and goes together, with a thick elastic band allowing it to do so. It is made out of aluminum, so it is light, and is white and red,. the applied color is like a plastic coating, so it scuffs kinda easily, but i don't care about that so much. TThe tip is a rolling marchmallow tip, and they weren't kiding when they said marshmallow. It is the size and color of a marshmallow. I will overlook it's hideousness though because it makes the cane really easy to use. You don't have to tap it unless you are on really crappy terraine, like grass or gravel. just roll it along from side to side.
After i received my item, i had to let it sit in the closet for a few days just for me to wrap my mind around owning one. After a few days of that, I was ready to give it a try..but only in a deserted area where no one would see me. So my husband too me to the local middle school which had let out for the summer. I closed my eyes (i still have a little vision left, so w wanted to rely fully on the cane and not even see anything to get used to it). We walked around for probably half an hour and it was surprisingly easy to use. I figure once i get to the city and have my cell phone with gps, i'll be pretty good to go.
so that is the only time i have used my stick...so far. I am not yet ready to let everyone i know see me with it, even though i know it is only a helpful device. I guess it's like two people standing beside a cold swimming pool. One person jumps right in, gets used to the water quickly ....but the other person has to take their time...first putting in a toe and quickly removing it...then they put in their foot and let is sit there for a while, then the other foot, then the legs up to their knees, and so on. I am that second person when it comes to my use of assistive devices. It takes me quite a long time to get used to the idea But once I am finally in the pool, I am sure i will be able to swim as well as the rest.
Sunday, June 10, 2012
Let's Get Real
What sparked the conception of this blog?
I was online today searching for groups, forums and the like composed of people living with blindness or visual impairment. I was interested in finding some people like myself to share some common ground and experiences with. But instead of finding what I was looking for , it seemed like all I came across were postings at least 2 years old on the AFB website that sounded more like personal ads than people just wanting to talk, or I would find articles promoting advocacy with the authors attacking some article, person, or organization about how the blind are just as good of citizens as everyone else and can do all the same things etc. Now, I am definitely not bashing those guys. I believe there is a definite need for advocacy and we as the visually impaired are just as good as everyone else, and just as capable. We're blind, not stupid.....
BUT, I think there is also a need for the visually impaired to g get real and admit that sometimes, yes, it's really hard to be me. This is not intended to be a pessimistic way of looking at life. Rather, it's a way of saying, if you're dealing with something, if a minute task feels like climbing a mountain, hey, I've been there! You're not the only one! And hopefully, in turn, it can help you feel better in your skin.
So to start this off, let me talk a little about myself.....
I'm 26, maried to a wonderful man, and have a great family. I wasn't born blind and have lived about 2/3rds o of my life as a mostly sighted person. I've been gradually losing my vision, and if there is any wrong way of coping with vision loss, I have probably done it all.
When I was a kid you would have never known there was anything wrong with me. I grew up just like the rest of my family. The only difference was that the eye doctor could never quite get my prescription right and my mother would tell me to stop looking down and walk confidently.
When I was 15, I went in for a routine eye exam and my doctor found an abnormality with my eyes and sent me to the eye specialist to get tested. after getting a few weird tests done, the doctor came into the exam room and gave my mother and I the news. She told us that what I had was called Retinitis Pigmentosa. It is incurable, and there is not much they can predict. You could go completely blind, or never lose another ounce of vision. Your vision loss could progress quickly or very slowly. You could go years without losing a bit then lose a bunch all at once.
So basically I had no idea where i would end up. Being 15, I was greatly anticipating when I could drive a car, but due to the news, I had to cross that one off my list. I continued on in life like nothing had changed. I didn't tell anyone except my family. If i didn't see something or walked into something, I would blame it on being ditzy.
I graduated highschool at 16 and decided to get a job and save up some money for a year before going off to college. I got a job at Subway, still not telling anyone anything about my eyes, and worked hard. Come august of the next year, it was time to go to college. I didn't really know what I wanted to do but after a year of general ed glasses, I decided on a major in the graphic arts. My vision at that time was pretty good centrally, but I had lost alot of perephreal vision. So, optimisticlly looking at my situation, I figured I'd keep prety much all that central vision and be able to work with computers and the graphic arts without my perephreal vision.
I was an honors student in college, had a major of both graphics and marketing and worked hard over the next few years to keep my grades up with a full work load and almost full time at my job. By the time I had finished my coursework for my graphics degree and had only about a year or so to go on my marketing major, I had lost more of my central vision abilities and had to accept the reality that I probably would not be able to perform a conventional graphics job.
After a couple of days of depression, I told myself that I didn't want to work in a cubicle anyway, and that I liked serving people. I was also fascinated with coffee shops and how they worked, so after talking with my family who owned a building fit for a coffee shop and who were supportive of me, I decided to go ahead and graduate without finishing my marketing degree and focus my efforts on the starting of my coffee shop.
It had become increasingly difficult to work a conventional job as well, so I figured by starting my own business , I could control my environment so that I could work with my impairment and still nobody would know.
After working hard for several months, the business was ready to open. It was hard work, but I enjoyed it and the prospect of making a successful business. A few months after opening, I met my husband at my shop. WIthin 10 months we were married and both running the business together.
Unfortunately though, I had again not predicted the amount of vision loss I would experience. As we ran the shop, my vision continued to decrease unti it was a day to day occurance of going to work and feeling embarrassed or humiliated for not seeing someone's money, knocking things over, not being able to look someone in the eye, no longer being able to bring a meal to a customer sitting down at a table, and no longer recognizing my regulars when they came in the door. I felt like I couldn't tell anyone though because who would want a visually impaired person handling their food? I thought it would destroy my business, and besides, there's never really a good time to broach the subject, "your total is $5.56 and by the way, I'm blind so I can't see you"
Anyway, by the time it was getting really difficult to work in the public where everyone knew me as someone who could see , it had been almost 3 years. I was getting burnt out, and so was my husband. We decided to get out of the business and pursue his career passion. He had helped me pursue mine until I was burnt out, and now I am going to support him as he pursues his. He is going back to school, and as he has gone through the process of preparing and applying, I have been without work and left to myself to finally sit and accept who I am and what challenges I have to overcome.
I don't know what is in store for me now, but now that I have stopped ignoring my problems, I've decided to share some with the world.
So, this is my blog. These are my real experiences, real worries, and real life. I plan to share some of my faults. I plan to post websites I have found to be helpful. I plan on posting what it is like to transition from sight to the lack thereof.
I've always wanted more than anything to fit in and not be different. Well, now I am forced to be different, and it is a daily struggle. I go through all the stages of grief on almost a daily basis, but remain positive on on the outside. I've often read the stories of other people coping with visual impairments who take their challenges by the horns and excitedly embrace assistive devices and their new way of life and I think to myself "why can't I be like that? Why am I so embarrassed by these things? Why can't I just grab life by the horns and say ' here I am worl!'?"
But, if I am like this, and struggle so hard, there has got to be more people like me out there, who don't vocalize what is running through their heads but who also search the internet for people dealing with similar challenges as a way to encourage themselves. So, I hope somewhere on this world wide web of billions of users that this little blog can help someone else out there. And if not, well at least I have opened up...in text anyway.
PS sorry this first post is so incredibly long. The future posts will in all likelihood not be this long. PPS Sorry for any typos. Still not used to this not seeing what I am typing thing.
I was online today searching for groups, forums and the like composed of people living with blindness or visual impairment. I was interested in finding some people like myself to share some common ground and experiences with. But instead of finding what I was looking for , it seemed like all I came across were postings at least 2 years old on the AFB website that sounded more like personal ads than people just wanting to talk, or I would find articles promoting advocacy with the authors attacking some article, person, or organization about how the blind are just as good of citizens as everyone else and can do all the same things etc. Now, I am definitely not bashing those guys. I believe there is a definite need for advocacy and we as the visually impaired are just as good as everyone else, and just as capable. We're blind, not stupid.....
BUT, I think there is also a need for the visually impaired to g get real and admit that sometimes, yes, it's really hard to be me. This is not intended to be a pessimistic way of looking at life. Rather, it's a way of saying, if you're dealing with something, if a minute task feels like climbing a mountain, hey, I've been there! You're not the only one! And hopefully, in turn, it can help you feel better in your skin.
So to start this off, let me talk a little about myself.....
I'm 26, maried to a wonderful man, and have a great family. I wasn't born blind and have lived about 2/3rds o of my life as a mostly sighted person. I've been gradually losing my vision, and if there is any wrong way of coping with vision loss, I have probably done it all.
When I was a kid you would have never known there was anything wrong with me. I grew up just like the rest of my family. The only difference was that the eye doctor could never quite get my prescription right and my mother would tell me to stop looking down and walk confidently.
When I was 15, I went in for a routine eye exam and my doctor found an abnormality with my eyes and sent me to the eye specialist to get tested. after getting a few weird tests done, the doctor came into the exam room and gave my mother and I the news. She told us that what I had was called Retinitis Pigmentosa. It is incurable, and there is not much they can predict. You could go completely blind, or never lose another ounce of vision. Your vision loss could progress quickly or very slowly. You could go years without losing a bit then lose a bunch all at once.
So basically I had no idea where i would end up. Being 15, I was greatly anticipating when I could drive a car, but due to the news, I had to cross that one off my list. I continued on in life like nothing had changed. I didn't tell anyone except my family. If i didn't see something or walked into something, I would blame it on being ditzy.
I graduated highschool at 16 and decided to get a job and save up some money for a year before going off to college. I got a job at Subway, still not telling anyone anything about my eyes, and worked hard. Come august of the next year, it was time to go to college. I didn't really know what I wanted to do but after a year of general ed glasses, I decided on a major in the graphic arts. My vision at that time was pretty good centrally, but I had lost alot of perephreal vision. So, optimisticlly looking at my situation, I figured I'd keep prety much all that central vision and be able to work with computers and the graphic arts without my perephreal vision.
I was an honors student in college, had a major of both graphics and marketing and worked hard over the next few years to keep my grades up with a full work load and almost full time at my job. By the time I had finished my coursework for my graphics degree and had only about a year or so to go on my marketing major, I had lost more of my central vision abilities and had to accept the reality that I probably would not be able to perform a conventional graphics job.
After a couple of days of depression, I told myself that I didn't want to work in a cubicle anyway, and that I liked serving people. I was also fascinated with coffee shops and how they worked, so after talking with my family who owned a building fit for a coffee shop and who were supportive of me, I decided to go ahead and graduate without finishing my marketing degree and focus my efforts on the starting of my coffee shop.
It had become increasingly difficult to work a conventional job as well, so I figured by starting my own business , I could control my environment so that I could work with my impairment and still nobody would know.
After working hard for several months, the business was ready to open. It was hard work, but I enjoyed it and the prospect of making a successful business. A few months after opening, I met my husband at my shop. WIthin 10 months we were married and both running the business together.
Unfortunately though, I had again not predicted the amount of vision loss I would experience. As we ran the shop, my vision continued to decrease unti it was a day to day occurance of going to work and feeling embarrassed or humiliated for not seeing someone's money, knocking things over, not being able to look someone in the eye, no longer being able to bring a meal to a customer sitting down at a table, and no longer recognizing my regulars when they came in the door. I felt like I couldn't tell anyone though because who would want a visually impaired person handling their food? I thought it would destroy my business, and besides, there's never really a good time to broach the subject, "your total is $5.56 and by the way, I'm blind so I can't see you"
Anyway, by the time it was getting really difficult to work in the public where everyone knew me as someone who could see , it had been almost 3 years. I was getting burnt out, and so was my husband. We decided to get out of the business and pursue his career passion. He had helped me pursue mine until I was burnt out, and now I am going to support him as he pursues his. He is going back to school, and as he has gone through the process of preparing and applying, I have been without work and left to myself to finally sit and accept who I am and what challenges I have to overcome.
I don't know what is in store for me now, but now that I have stopped ignoring my problems, I've decided to share some with the world.
So, this is my blog. These are my real experiences, real worries, and real life. I plan to share some of my faults. I plan to post websites I have found to be helpful. I plan on posting what it is like to transition from sight to the lack thereof.
I've always wanted more than anything to fit in and not be different. Well, now I am forced to be different, and it is a daily struggle. I go through all the stages of grief on almost a daily basis, but remain positive on on the outside. I've often read the stories of other people coping with visual impairments who take their challenges by the horns and excitedly embrace assistive devices and their new way of life and I think to myself "why can't I be like that? Why am I so embarrassed by these things? Why can't I just grab life by the horns and say ' here I am worl!'?"
But, if I am like this, and struggle so hard, there has got to be more people like me out there, who don't vocalize what is running through their heads but who also search the internet for people dealing with similar challenges as a way to encourage themselves. So, I hope somewhere on this world wide web of billions of users that this little blog can help someone else out there. And if not, well at least I have opened up...in text anyway.
PS sorry this first post is so incredibly long. The future posts will in all likelihood not be this long. PPS Sorry for any typos. Still not used to this not seeing what I am typing thing.
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