Day 7- Finding the beauty in what you can't see

My big sister and I

I have always loved bright lights, rounded shapes, and  bright colors make me happy.
I guess I should say that what I saw without my glasses as a child,  was just of light and dark, fuzzy colors and fuzzy blobs, no real defined shapes...  With my glasses on, there were more defined shapes, but things were always fuzzy, never crisp or clear.

We went to New Mexico and the giant rock formations looked like castles, and the giant cavern at Carlsbad could have been ballrooms or giant libraries or maybe a large dining hall...The beautiful and mysterious...full of hidden rooms and dim lights and echoes. I was enamored, all of  America is gorgeous, but to me, New Mexico holds a place in my heart.

Monahans, Texas

As a kid, my family traveled a lot. I didn't realize how much until I had kids of my own. I didn't know just how hard it is to travel. Having kids and traveling is tough on its own, but  having a kid with  low vision is tougher. I can't imagine how my parents did it, dragging around a kid that was 'lost' most of the time. I did actually get lost a couple of times. Technically, left behind a couple of times...
I probably do need therapy.

So we traveled all over, visiting family, going to reunions, visiting landmarks, camping, amusement parks, all those fun things you do when you are kids. My father was an angel, he put up with a car full of women all alone after my brothers were old enough to leave home. 

Mom and my sister in New Mexico,  I think this was Holy Ghost, NM

When I was young, I didn't know I was different, I was adventuresome, loved to climb rocks, play in the water, run like the wind, and be a kid. Every chance I got, I did all those things. I was only limited as to how far away I could get without my mother finding me or how far my sister would let me tag along.  I was never really frightened about getting lost,even after being left behind.
Some of our vacations stand out for me. I loved the mountains of New Mexico, when we camped there, it was so fun.  Even more I loved  the lava beds of Malpais National Monument. I've hunted and hunted for pictures of that part of the vacation, but have never found them,  I loved camping there, the fog in the morning was so amazing. Maybe the fog holds something in it that is familiar for me. I love to walk in it, safely enveloped in the thick blanket. It is how I see when I have no glasses on and it makes me kind of fuzzy inside.

this is nice, snake free water!

 My oldest brother married, and he and his wife bought a boat, the whole family went camping together on a large lake, don't remember where it was,  but remember it felt huge. One evening, the "adults' went out on the boat, I guess they were fishing or maybe skiing. Anyway, they left my older sister in charge. We went out in the lake... and as older sisters do sometimes, she scared me. The bottom of the lake was very even for several yards out... with little ripples in the sand and  smallish rocks here and there. I didn't know they were rocks. I could just see dark spots on the bottom. My sister wanted to swim, or just to get away from me... so she told me the dark spots on the bottom were snake holes and If I didn't stay back in the shallow water I'd get bitten by one.

This is iffy water, could be snakes... or rocks

OK, so I wasn't the brightest crayon in the box. I believed her. I had been warned to watch where I walked, stay on trails, to not get near snakes. Right, like I would intentionally get near a snake...
So, her telling me this seemed like a big sisterly-loving thing to do. I was terrified. I must have annoyed her even more with my panicked paddling trying to get to her, I am sure I cried.
On and on this sort of thing went. She didn't mean to torture me, just to be a big sister that was tired of dragging her little sister around. She was seven years older than me and I am sure I was a pain in the butt. Me being gullible, believed everything she told me.

As a teen, I tried to join as many organizations as I could, I was elected to the state board for the Junior Classical league. For a few of the statewide meetings, I had to fly... alone.... I had never done that and was terrified. One meeting was in  Houston and a connecting flight to Clear Lake City  and then a car trip on to Uvalde. (Texas is a large state).
 Now, Houston Continental is a crazy airport anyway, but I got turned around and ended up missing my connecting flight. I sat by myself until they had another flight, the last of the night. It was dark and I was a bit worried, but it all went well...
It was a great learning experience.

The Hotel Victoria, Chihuahua City

In High School, I also  traveled to Mexico with the Spanish Club. Four times in two years. ¡Ay, caramba! No one ever said it would be easy, but each one of those trips was frightening and fantastic!  I got lost in Chihuahua City, and I loved every minute of it. We had free time and were told to do something like take a bus, a taxi, do something hard... I did... I rode the bus, had no idea where I was, and relied on the kindness of the good citizens of Chihuahua to help me out, which was the object of the exercise I suppose...
Street vendors were kind enough to point and give detailed directions, Strangers on the sidewalks,  shop owners... waiters in
restaurants, they were all great!. I spent a whole day wandering the city streets with no communication with the rest of the group...
 I would be terrified to allow my kids to go, Today, they would not  be allowed that freedom to just wander alone in a huge city.

One of Pancho Villa's widows

 The day to day of being in Mexico was difficult. By this time of my life, my vision had worsened to the point that I wore contacts and if I didn't have them, I would only see blobs of color and very little at night. I used bottled water to clean them and prayed I wouldn't lose one.  having contacts meant the difference of being able to actually find my way around or sitting in my hotel room, alone.



Picture of Houston Intercontinental Airport by airway news . com

Day 6-- Planes, Trains, and Automobiles... (more like buses, taxis and foot power)

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Welcome back, today is Day 6 of the 31 Days writing challenge. Top of the morning to you!
Yesterday, I shared a bit about the last couple of years worth of my vision, how it has declined... and that I have had to give up driving. That was a difficult post. I nearly didn't finish it, and nearly didn't post it when I finally finished it. The post started out to be a few lines just hinting at my struggle with an aging parent, but ended up with me telling all, or nearly all, about my woes.
Well, in that spirit... I would like to talk a bit about getting around when you are blind.
It is pretty difficult. For myself, I can talk about the pain of giving up my independence, since I drove from an early age. I know how other people do it, but really, can't imagine having total blindness...For me, it has been difficult to not be in charge of where and when I  do anything, from going to the grocery store to going to work, or just getting out of the house because I have cabin fever. You depend on other people. Or buses. Or taxis. Walking.
I know that a lot of people don't drive... but where I live... it is a necessity. The town is spread out widely, traffic is horrible, it is excruciatingly hot in the Summer, and  until just recently, we didn't have public transportation.

Caen, France

 Yep... no buses. When they did put them in, they proved to  be more of an inconvenience than a help. They don't service the whole city, especially some of the areas with  a great distance to grocery stores, or those that have aging adults.. or those with young kids. I would have to walk nearly a mile, which if I was younger, and it wasn't 100F+on many days... I complain, but it is getting hard to traipse around in the heat.  

Heaven help you if you work early or late, the buses don't run.  On my route, the first bus comes at 6:50 am the last bus... 5:50 pm.  No joke.  Saturdays it is something like 8:50-4:50, and none on Sundays... or holidays... Really?  Yes, sadly enough... really.
How do you get around if you don't drive?

Well, most of the time, someone who is visually impaired will have someone help them, drive them or walk with them, or, if they are very independent, they will use a cane or guide dog, usually both, and take buses or taxis or walk... or... in my case, I do a combination of asking for someone to drive me, holding on to someone's arm... or using what vision I have to gauge the distance of objects... sometimes I fall.

Dunkerque, France

We traveled to the UK and Europe a few years ago, after my vision had taken a big turn for the worse. I wanted to go again to be able to travel before I lost all vision. I really wanted to take my son and give him a chance to see where my father had been during WWII. I wanted to be there.
It was a very difficult trip, but one that I wouldn't trade for anything. I had a few incidents where I fell, some when I nearly did, and a few that I just felt so overwhelmed that I sat down and cried. I am sure that my son will have to visit a therapist when he gets older... He will regale the doctor of his experiences with his blind mother in distant countries... sigh...

I have a question... sincerely, this is a serious question. If a person is blind... how do they find the braille sign?  Honestly. I have seen them in different locations next to bathrooms stairs, etc.. never in the same spot, always different heights, how do you know where to find the braille if you are blind?

Isigny Sainte Mèr, France

These are the things that I notice. For years I've seen them and wondered. Traveling around the States, traveling in foreign countries... Isn't there a mandatory something or other that states where these signs are put? Really... really? There are rules for everything else...

Bristol, England

OK, so  a lot of people like myself don't use a cane. I have one, I just won't use it. I refuse to... If I am walking, I do tend to be slow, and if I am around traffic, I get nervous. I don't have a lot of practice walking around traffic. Where I live, the lanes of the intersections are really wide. Usually 8 lanes to get across... so even when I could see better, I didn't try to cross them. If I can't get to where I am going, I would call a taxi before trying to cross... but in some of the larger cities, it is easier to traverse the roadways. Crossing lights in many places have a beeping or countdown to the crossing, and you can judge when to cross by that, and hearing traffic is vital.
 for the blind just finding the street is a challenge. Some of the ways include:

• Curb or the slope of the ramp
• Truncated dome detectable warnings, if available
• End of building line and open sound of the intersection
• Sound of traffic on the street beside them (the parallel street)
• Sound of traffic stopping on the street they are approaching (the perpendicular street)
• Presence of pedestrians
• Presence of an intersecting sidewalk

Bristol, England

Then you have to assess the crossing, what type of control is there? Some of the questions you have to ask are:

• Is this a signalized intersection?
• Do I need to push a button to actuate the WALK interval? If so, where is the button?
• Is the button close enough to the crosswalk that I will have time to push the button, position myself correctly at the crosswalk, and reestablish my alignment facing the destination curb before the onset of the WALK interval?
• Which button controls the WALK interval for the street I want to cross?
• Does it stop traffic on one street, or all traffic?
• Do cars still turn during the WALK interval?
• Is there a second button on the median or crossing island that I must push?
• Will there be a surge of parallel traffic telling me the WALK interval has begun? Will I be able to hear it over other, concurrent traffic sounds?

You notice where hearing is important? Very important to visually impaired people?
I worry that I would never be able to find my way around when my sight goes altogether. It is really frightening... I mean, even if i used a cane, how the hell do you find the controls to the street lights? Do you hit a lot of people with your cane if the intersection is busy? when walking down the road... how do you not fall over bumps in the sidewalk? How do you avoid just falling headlong every few feet?
But I have to say, millions do it... I am sure I can.
The thing that got me when we were overseas... is that the curbs are different heights than in the States. We have pretty standard rules for curb height, and only in really old sections of towns and I suppose in Historical sites... there might be a difference. but for the most part, if you come to a curb, you know how far to step off. Generally.

Stokes Croft, Bristol, England

We were in Bristol, England down in Stokes Croft, looking at artwork and I couldn't tell the difference between the sidewalk and the street, the curb was tiny, maybe an inch and a half to two inches, and they were the same color, I stepped right off and fell.  I was more embarrassed than anything but it did hurt. Not long after that I nearly fell in front of a bus. I just couldn't get my bearings with the curbs. A few days later, I fell again walking down a pathway with small steps leading down to the

Along the River Eden, Cumbria, England

Eden River near Carlisle. I broke my new camera. I fell right smack dab on it. I was more worried about my camera than myself, that is until I tried to get up and
couldn't.That's when I started to wonder if I had it in me to travel anymore,

 Tomorrow, I'll show a few more places we visited, and tell you how we got from place to place and navigated the ocean.

Bristol, England

1.   National Cooperative Highway Research Program-Accessible Pedestrian Signals: A Guide to Best Practices, Chapter 2, p.10

Day 5--Miracles in the midst of madness

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Welcome back to the 5th installment of the 31 Days of Vision
We are having a beautiful Autumn, the nicest I can remember in a long time,  Cold mornings followed by warm, languid afternoons, and we are enjoying every minute of it!
Sunday is always our 'family day' so this is going to be a short posting. I am pulled by the desire to be with my son. We are going to pick up the matriarch of the family, who will be 90 in January. Mom is needing to get out for the day, and we are going to take her to the college campus for a nature walk and a picnic.
I can't drive so it isn't me who is taking us, my friend is driving, bless his heart, he allows himself to be dragged out like this, I think he kind of likes Mom though, she is always doting on him. I think he enjoys that!
Having an aging parent is tough, more than I ever thought it would be. I didn't have a lot of experience with my grandmother, She was pretty old when I was born , I am the last of the grandkids... My grand mother had an accident in her yard and went into the nursing home, didn't live too long after that. Mom on the other hand was driving until a couple of years ago. she was starting to get forgetful, but not to a point of being a danger... now, I wouldn't trust her to walk down the street by herself.
Anyway, she isn't able to do much now and  she is frustrated. I am frustrated since I am in the same boat. I feel really inadequate not being able to help.
Right after she had surgery a couple of years ago, I was able to be there every day, I went to the hospital and sat with her, took the kids (my son and grandson) and we made sure she didn't get lonely or get up and walk out...after she was better but not able to do for herself I would dress her, feed her, and be there off and on all day, but that dwindled when she was much better physically. My son went back to school and I had classes to teach I was only able to go help her with dinner and visit for an hour or two, then when I started having so much more trouble with vision, once a week was all I was able to make it.
Shuttling my son back and forth  from school and football and whatever else he was doing... took everything out of me and I had to let something go... I quit teaching, I quit socializing, and I concentrated on my mother and son and nothing else.
It sounds kind of drastic and it was, but I was having so much trouble seeing . The retina in both eyes started turning loose. I was losing what little vision I had. The doctor gave me medication to help with the swelling, and an antibiotic, to ward off infections, and I sat in a dark room trying to figure out if I would ever be able to see again. I was assured it wasn't that bad, that I would retain vision, but why in the world was it getting worse and worse all of a sudden, my eyes were swollen and I couldn't even let the doctor examine them. I was in  week after week with changed drops and more dilation and  more pain, I was allergic to the drops, before the doctor figured out what it was, I had a corneal ulcer that was terribly deep and terribly painful. I had to give up driving. I had to give up working altogether, and thank God, it was Summer. My son went to stay with my daughter and go to sports camp. I laid on my back, with a warm compress on my eyes, in the dark, moaning and groaning... I couldn't do anything.
It lasted all Summer long. I had to keep my right eye bandaged, the left wasn't as bad. The doctor threatened to sew the eye shut... really... and I was desperate. I had to be able to drive again, no way I can make it alone with a kid and a mother that needs me... so, I sucked it up and just did it. Put on thick sunglasses and bandaged my eye and just drove. My son had to go to school, he had to get home, he had to go to activities, he had to have food, I couldn't be in bed the rest of my life...
The pain was excruciating at the end of the day, every day, my right eye was constantly swollen and bulging,  I can't begin to describe that pain.
So,  I prayed because one night I couldn't take the pain any longer. I had been out all day, to drop off and pick up my son, go to the doctors, pay bills and to the grocery store, and the pain was so much that I didn't think I could stand it another minute. And I prayed sincerely. Please take away this pain, I can't take it another minute... I sat at the kitchen table and cried. I went to take a shower, bent over to turn on the water, and braced myself for the pain... it didn't come. Oh, the ulcer hurt, but the stabbing, deep pain that I had been having any time there was the slightest pressure on my eye, was gone.
I slept for the first time in months without the horrible stabbing pain.
Now, the ulcer is better day after day. It is a struggle every day to keep my eye wet, clean, not touch it, keep it closed most of the time. It is hard to go outside, but we managed to go camping this Summer in the mountains where the air was moist and clean. I have a patch to wear with a pad under it to keep the lid closed so moisture doesn't escape. I use drops to help make tears but have to use them sparingly, they irritate my eyes, I don't get any type of dilation for eye exams, I don't use anything for swelling now. I have had to give up driving all together and depend on family or friends to help.
 I give praise to God every day that the stabbing, horrid pain is gone. I honestly couldn't have stood it any more. You can scoff if you want, but I believe that it was divine intervention. I truly believe that God knows how much we can take, and will not give us burden more than we can handle. I won't ask for total healing. I don't think that is what I am supposed to do. I asked for relief for what I couldn't bear and  the strength and grace to bear what I can. I think that is what is supposed to be.
Soooo.... I've written way more than I had planned.. but I wanted to share with you this miracle in the midst of the madness, whether you believe or not, it was. 

Day 4~ Softball: Not a Sport For Sissys

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   Welcome back, this is Day 4 of the series of blogs 31 Days of Vision.  I'm glad you could visit with me today, since it is Saturday, I'll not get too deep in the numbers, I'll leave that for another day, but... I will tell you that it is hard not to list the facts and figures when I am talking about vision.
      I've been visually handicapped for most of my life. In one form or another, I have had really bad vision for my whole life, though there are short periods of time that my vision was relatively good, like 20/40, 20/60 corrected. I am lucky, really lucky,  so many people have less vision than I do know that it seems kind of petty of me to complain about it.  For years I hid the problem of my low vision, thinking in my mind it would be better for people to think I was a klutz than to have them know I couldn't see.  I know, right? That is pretty dumb.
     I wore glasses from a pretty young age. I don't know if I was visually impaired before that time, I don't know if it was something that was a sudden, drastic change or if it was something they happened to catch with a school eye exam... I have no point of reference for what I saw and how long I saw it. I do remember seeing stars for the first time. Only the big ones. I could never pick out constellations, I knew what they were, and their names, but for the life of me... I could never pick them out in the sky.
     As a kid, you notice if you are different from other people, not usually because you know that you can't do the same things, but that other people pick it up and point it out to you. When you are a kid, you don't want to be different. You want to fit in with all the other kids... to be popular, or at least not be picked on... ME? I wanted to hide. I didn't want to be noticed. I didn't want to be picked on, to be different, to be me. 
     The ability to see has a lot to do with your self esteem.
Growing up with a visual disability can be very difficult, even if the visual acuity isn't that much of a loss, it is hard to fit into the day to day activities of a normal child.  Glasses get in the way, and if you wear them, kids will say something, no matter how nice they are...they do notice Even a simple statement like, ..."I like your glasses",    can trigger panic and anxiety in the kid that is wearing the pair.

pretty sure mine weren't this cool

     If you are cool, and have cool glasses, you might fit in better, but when I was a kid, I was the only one in class that got glasses. UGH, My mother kind of pushed me towards the ugly black framed ones... I chose pink, but they were horrible. I look back at pictures and they were hideous.  I got picked on from the first day that I wore them. I could see so I didn't mind it so much ...Who am I kidding? I hated it!  I went through glasses in quick succession, my poor parents. I don't know how they kept me in new glasses. I either broke them or had to get new prescriptions a couple of times a year. Sometimes more often. I lost them, I broke them, I hid them. I hated them. I went into contacts when I was 11. Supposedly, they would help slow the changes in my vision. I don't know about that, they had to be changed a couple of times a year, and I just never got that it slowed down the changes. It did help me out socially though. I finally didn't have to wear the glasses. but the contacts had their own problems. We moved to the desert and I had to get used to sand, wind, more sand, and well... more wind. Dry eyes are a norm, scratched cornea are the norm, even if you don't wear contacts. I was miserable for years.

   When I was a kid, I loved to play sports. I was sick a lot, but when I went to school,  I wanted to join in, especially softball. I was the kid that got put in way out left field, where it seemed an eternity before a ball would actually come my way... when it did, I missed it. Totally missed it. Not even close to catching it, missed it. If I wasn't careful, I might get hit with the ball. That was usually when it was up really high and coming straight down, I had a really hard time discerning a ball from a cloud.  I got laughed at, A lot.

     I loved to swim when I was a kid. Of course you can't go in the water with your glasses on. I couldn't find the quarters on the bottom of the pool. I couldn't find my friends. I think my sister used to ditch me a lot, I couldn't see her... had no idea if she was around.  I kind of went into my own little world when I was in the pool.

Not Westmorland, but about the same size!

When I was very young, the city pool was a huge, huge pool that covered an acre, it was called Westmorland. Mom would drop off my sister and me at the pool and let us stay the day... Probably not a good idea. I got sunburned really bad, I don't know how many times. We never wore sunglasses. We never wore sunscreen...I think my sister used Coppertone maybe, but that was the same as using baby oil... which she did use a lot.
     When I was a bit older we went to a Summer camp that had an Olympic sized pool which was cool. I loved swimming back and forth, trying to hold my breath, or swimming to the bottom under the diving boards. Swimming is something that you can lose yourself in, even if you are blind. As long as you have your bearings, you can swim for hours and hours.

This is the Westmorland!

 

     Other sports, not so much. To play soccer, you need to see. Track, you need to see. Basketball, you need to see. Volleyball, Dodgeball, tetherball, yep, they all take vision. I sucked at all those. I found out I was good at canoeing, and gymnastics. I loved the balance beam, and I don't know how I was able to stay on it, I guess just by feel. That is a lot of it, you know? I still feel my way around.
I count steps, I have really good sense of direction. I memorize.

     Kids tend to adapt to what they can do, the physical part is not the hard part, kids figure out ways to get things done. It is the social part that makes people so depressed. There are studies on the socialization of adolescents with visual impairment. Kind of bleak studies, really. Psychosocial problems {1} are at the top of the list when there is a discussion on disabilities. Different types of support are necessary to the development of all adolescents but especially to impaired adolescents it is vital to their psychiatric balance. They are: emotional , instrumental, informational, and appraisal support. Each in it's own way is important.
     Emotional support encompasses the love, trust, empathy that is given to the kid, instrumental is the time, effort and monetary support. Informational is the advice and sharing of ideas and the appraisal support is the feedback that is given to the child. Now, I know this seems normal today... Giving kids the physical and emotional support that is needed to be nurtured... but, well, when I as a kid... I don't know that it was a factor. My mother wavered on feeling sorry for me for being sick all the time,  to wanting me to go outside and play and stay out from underfoot. We were kind of booted out and told to 'suck it up'.
     I don't know that anyone ever gave me council on how to do much of anything. My parents just expected me to be good, go to school, and... well. that was about it. No lectures, no advice, no real emotional support... I was expected to do what all the other kids in school were doing. I was expected to be there, if I wasn't in bed sick, I was expected to go to school, to participate, to come home... and stay out of trouble.
      Maybe I needed counseling, but I think I did OK. I graduated. I wasn't the brightest student, but I wasn't the worst. I didn't excel in anything, but I didn't fail. I went on to college, got married, had a family, did the norm... while a lot of my friends went on to have careers, My mother did push me towards a degree in Nursing... I did the only thing that I could do. I refused to get my license.  I didn't get a good degree, I was happy to not have to stress out all the time, trying to keep up. I I just flat out didn't want to be a nurse.  I wanted a family. I wanted to be lost in the crowd, to not stand out... to be something of a loner really, keeping my family close at hand. I did that. pretty much up until about 6 years ago. Maybe I need counseling now?

     By the way, now they have what is called Beep Ball, A form of baseball for the blind, heck they have teams that actually are better and more exciting that regular baseball, one team is called the Chicago Comets. {2} They are a bunch of grown men that are tough and competitive. They play with a ball that beeps (hence the name) and with two bases that are large kind of punching bags, The pitcher and batter are on the same team. By the way, the pitcher is sighted... he throws the ball hollering Ready, Pitch, and the batter swings at the ball when he hears it near to him.  He runs to whichever base is beeping, if he gets there before the ball is fielded, its a score, if not, he's out.
The game is pretty physical and rough. Not at all what it was like for a girl playing softball back in the day. lolling around in outfield... hiding. Hoping the ball wouldn't come, praying the ball wouldn't come.


1.  Taina Huurre- Psychosocial Development and Social Support Among Adolescents with Visual Impairment-Academic Dissertation,Faculty of Medicine of the university of Tampere. June, 2000. p. 20

2.  http://www.chicagomag.com/Chicago-Magazine/September-2011/For-the-Chicago-Comets-Blindness-No-Impediment-to-Tough-Competition/