Thursday, January 28, 2016

I am 'legally blind.'

I am 'legally blind'


   Me age 3 with my first pair of glasses

What does that mean and how do you do that??

How do you do that????
A lot of people have asked me that question over the years.
This story is a personal story to give the general seeing public an idea of what it is like to be a legally blind person.

The general term 'blind' applies to all forms of visual impairment. For me I am 'legally blind.'

What does that mean? 

Legally blind means that a person's correctable vision tested with glasses [in one eye or both eyes] is less than 20/200 or 6/60.  Normal vision is usually considered 20/20. 

If some one can see something 200 feet away, a legally blind person can only see it if it is 20 feet away.

For me - I cannot see any thing in focus 20 feet away! I can only see things that are about 2 feet away for large objects and 2 inches for reading a font size 18. 

So I am 20/2000 in my right eye and 20/3000 in my left eye since birth. There is too much scar tissue from the damage at birth for any usable reading vision for my left eye. 

My vision got worse over the years with internal damage to the retina with detachments. I also developed cataracts in the year 2000 which the Dr's feel they should not operate because my eyes are too delicate. Additionally I have been diagnosed with Normal-tension glaucoma in both eyes. I use eye drops nightly for that.  I also have a cracked cornea in my left eye because the eye is too big and will not close all the way. I wear an eye patch at night or when I am sleeping. 

Thoughts that run through my mind

Here are some things that run through my mind every day and/or I want to say them to people…

* I am blind not deaf!
* Yes, I can hear you!
* No, I don’t see!
* Talk to me not my guide or companion.
* Yes, I know about guide dogs.
* No thank you! I don’t want a guide dog at this time!
* Let me take your arm, don’t drag me!
* I am not totally blind.

This story is about how I deal with being legally blind and best ways to handle it, addressing many issues such as the list above as well as my daily living skills.
Some skills I picked up by trial and error along the way, others, I learned at Blind school when I was 45. 


How to navigate the bathroom and kitchen

When I was a child I had chores, I remember standing on the wooden milk crate to wash the dishes. I think it took me 2 hours to do the dishes. Not that it was hard to do but that I LOVED to play in the water! YEP! I am a water baby! So I imagine with the dishes soaking for that long they must have gotten clean by themselves. I am sure what ever I did my Mom went back in to check and re did a lot of things… But I got experience.

As an adult I used to be quite the gourmet cook! I loved to cook! Fortunately I never set the house on fire or cut my fingers off. That came later… No — just kidding… I started to accidentally cut my fingers a lot and did almost burn my Tipi down (yes, I lived in a Tipi for a whole summer)… but again that is a whole other story…

I have lately found some things to help me get by in the kitchen and bathroom. Lots of ideas I have learned from blind school, blind social group meeting interactions and lectures by professionals to our support group.



Bathroom:

Bar soap helps:
I kept dropping the bar of soap so I took some plain washcloths and sewed them on two sides to make a sack with a large needle and sewed those sides shut with some hemp string. I finished it off with a draw string, knotted it at the end. That way I can hang in the shower and it holds the bar of soap very nicely.

Shampoo and conditioner:

One day I forgot to mark the new bottle of conditioner. I accidentally used my daughters face wash instead of conditioner. If the bottles of shampoo or conditioner are the same size I put a wide rubber band on the conditioner. I use a band like the kind that holds a bunch of broccoli. I like the big bottles of shampoo with a pump and squirt nozzle. That helps a lot! I use a conditioner that comes in a tube and I flip the top and squeeze out the amount I need. Having a shower rack helps to organize items as well. But I forgot to mark that new bottle with the rubber band and or ask her for sure which one it was… Oh dear!

Baby wipes:
I love baby wipes! It really helps my skin to stay clean from dust and dribble I get on my chin. I really like the brands with the plastic container. I like the unscented with no alcohol to dry out my skin. I like the ease of they way each cloth pops up to have a new fresh cloth each time I need one.  I purchase my baby wipes by the case from Costco which saves me a lot of money.

Make up:
I quit using make up, but I used to. I would stand so that I was facing a mirror that was hanging on the wall. I could put my fist next to me cheek and guide the eyeliner on. By the time I got to be age 35 I couldn't put mascara on anymore about poking myself in the eye. So that's why I decided to quit. 
I use basic lip gloss or chapstick. Regular lipstick ingredients bother my skin. 

Hair removal:
I have to feel my way with the tweezers for those pesky face hairs… I hate razors…  I quit using real razors when I started to shave pieces in my legs off. I was in my 20's.
After that I used electric razors to shave my legs. 
When couldn't see my legs anymore and I was married my husband's liked me to have smooth legs, so guess who got to use the electric razor?
After I got divorced I went native. I could care less if my legs are hairy when I have shorts or her bathing suit.
I have no idea if any totally blind ladies use real razors!  Good question!


Here are some tips that help me in the Bathroom 

As a legally blind or blind person you need to identify things.
besides brailing labels you can:

1. Put a rubber band on either the shampoo or conditioner to identify that as one or the other if the bottles are similar shape and size.

2. Put your bar soap in a washcloth that is sewn up on 2 sides with a draw string to make a pouch, or a rubber band at the top. This will keep the soap in your hand and off the floor of the time. This makes it easy to hold the soap and washcloth at the same time and you can put the drawstring on your wrist. hi just use the rubber band on mine.

3. Use the "Hi-marks" tactile pen that makes a bump on the container to identify it. You can get tactile pen online. Links at the bottom of this page.

4. You can get clear or colored dots that are raised like Braille called Bump dots. They are made of plastic with an adhesive on the back. 


Kitchen:

Kitchen is over the top for me now. I make a few simple things by hand by assembling things that my daughter prepares for me, or reheat what my daughter cooks during the week for me. She makes soup from scratch and puts them in the freezer in single serving plastic containers. All I have to do is place the frozen container in the refrigerator 2 days before. Then the day I want to use it place the contents in any glass or microwave safe container in the microwave and reheat. I have a colored bump over the start button on the microwave, every time you press it it sets the timer for 30 seconds. I know how long to reheat each item such as broth, water, foods, and almond milk for my tea or hot chocolate. 

Finger guards:
In the past I used the food holder and finger guard. They are sure help me to keep from cutting my my fingers. I used these for whole pickles and apples. Now my daughter chops things for me that need a sharp knife.  We keep the foods in the refrigerator on the top shelf which is dedicated the right side for my things. I have my own cupboard right next to the eye level microwave that is above the stove top. The bottom shelf is stocked with some things i use often.  The rest of my non perishable items are on a shelf in my closet in my bedroom. My medications are there as well. She also sets up my pills in three containers for a week in each container. I have one for A. M. pills, Noon pills and bedtime pills.  Other pills such as tylenol and pain pills I keep on my desk. I have a clipboard with a daily schedule where I check off what I have taken and what I need to do.  That really helps a lot so I do not forget anything. 

Pyrex glass:
I can only eat small portions 6 times a day now so I bought a half dozen 2 cup glass Pyrex glass containers. I use red nail polish to mark a bold line on the outside of the glass at the 1 cup, 1 1/2 cup and half cup lines so I know how much I want to add to the glass. Then I microwave the contents.  I also have some other glass containers that I know they hold one ot two cups.  I add the oatmeal, fruit and cinnamon, then add the boiling water to the top of the cup just before it flares. My oatmeal is measured in a baggie, which I can do and is ready to go for each serving. 


Electric Tea Kettle:
I have a glass electric kettle to boil water for my tea and hot chocolate. I really like the kettle that way I do not burn myself on the stove. I use a metal Thermos container to hold my tea. The thermos holds two liters of the tea. I make it weak with just two tea bags each day. I use the 20 oz Rubbermaid reusable plastic container for water with lemon juice and/ or fruit juice mixed with water. Lots of paper towels and napkins are always needed!
That is the extent of the kitchen for me.

Kitchen products I use every day

I use a Sharpie pen in black or dark purple to go over the vertical and horizontal lines on the glass measuring cup to highlight the lines there as they fade with time. I also write a large 1/2, 1 and 2 at the appropriate marks. You can also use the Hi Mark marker and or the bump dots as described above.  My daughter marks the plastic containers also with this pen so we know the date and the content of the things in the freezer. 


I am blind not deaf!

A lot of people shout at me and I cannot figure out why! 
Do you think that I can see better if you shout at me? 
Or Do you think that I am deaf as well as blind or visually impaired???
Most visually impaired persons are not deaf, some are. 
Well truth be told I do have a hearing issue that I cannot distinguish consonants.  Volume will not fix this issue, but having a one on one conversation will help.  I used to use an assisted listening device in college that helped me to hear only the teacher.  

The best way to be blind is to *S*M*I*L*E* and say “Yes, I can hear you fine, now just tell me how or where …..”

The best way to be blind in the twenty first century – the first portion of it anyway, is to be very grateful that there is a plethora of help and assistance available!

The world opened up for me beyond Motherhood and being a wife after I went to blind school as an adult at age 45. For some reason, I was what they called  “mainstreamed” into public schools in my childhood and youth in the 1950's.
By the time I was age 13, I could not read a paperback book or the textbooks for Junior High School as the print was too small. My grades began to fall and I stared to become depressed. It is a wonder I made it through to graduate high school. I am positive it said in my portfolio for High School I was a certifiable idiot… LOL!!!

I tried to go to college out of High School but I was either getting an A or an F for the same reasons!
So after 4 college tries over the next 20 years I gave up and enjoyed life as a wife and Mother of 4 wonderful children who are all now adults.
I had jobs such as sales associate and cashier, and child care and food prep in a convalescent hospital.  Most jobs ended because I could not see well enough and I was afraid to tell them I was legally blind.  I had no idea how to advocate for myself or find a job that I could stick with and have a visual impairment. There was no adaptive equipment then.

Yes, I can hear you!
Well this is not so true anymore. However when I was a child I did not have as much of a problem with hearing. By the time I was a teen I could not hear the words and music [isn't that a movie??] at the same time. So if they had bad Lyrics when I listened to hard rock etc, I never heard them!
My teenage daughter was listening to “Cinderella” the rock group in the 90′s and I said that’s nice! I thought she was listening to the Disney Cinderella! LOL!!! Same thing with the music group the Dead Kennedy’s… LOL!!! I could not hear the bad language or any of the words…

Thankfully, now there are some awesome head phones and smart phones that I CAN hear the words better now! Yay! I don’t know but I think it is some kind of deficit that I have hard time with consonants… I don’t know the medical term for it…
So with awesome headsets and awesome smart phones I CAN hear and that is one more way…
Best way to be blind… and part deaf…


No, I don't see!

When I was a child and even to this day I cannot see the chalkboard, write board or any board that is more that 6 inches away!
I cannot even read the Highway signs… I had to quit driving when I hit a parked car in 1992…  I stopped driving in 1994.  I had to get rides or take the bus, train or Paratransit when I became wheelchair bound. 

So anyway back to school… and the chalk board…. Uggh chalk dust was bad for my allergies…. I had a rough time with that… So what did I do???
Best way to be blind when you need to know what is on the board???? You listen very carefully and “learn by rote”…. I had to memorize a lot of things… Bad news today. Now that I am in the ‘Senior" Zone I had a harder and harder time with memorization to retain that memory! 
So I do not know how I did it, but I did…

When I went back to college when I was 43 they had just started the Americans with Disability Act bill or ADA. I had taken class in the 1970's and 1980's  at college here and there and there was NO ADA… I flunked out of 4 colleges because I did not have adaptive equipment, not even a magnifying glass. 

Thankfully I met a woman who told me about the ADA and college where she worked. She referred me to the Department of Rehabilitation in California. 
So I am here today because I learned to see a whole new way to learn!
It helped that the Professors and teachers were kind enough to wear a microphone and me wearing a personal receiver from the assisted listening device. Having the teachers say exactly what was on the board instead of “See how this goes here and that moves here” etc…..
Praise the Lord for ADA!

Daily Living Skills: Clothes:
Dressing and matching colors is a real problem for me.  While I am not color blind, I am missing some of the rods and cones in my eyes that help identify colors.  Shades of red and the most difficult followed by shades of green and blue.  
Thankfully my daughter helps me with that now! But you can place your shirts over your skirts that match on the hangers in advance. There are little metal tags and plastic buttons that are different shapes and colors you can buy to sew in the hems of the clothes that let you know what basic color they are. It helps to have the sales person or friend match up the correct color when you shop. Bring along that skirt when you are looking for a new top to match it. I usually wear black pants and black skirt so most of the tops will match the pants or skirt.  Now my daughters help me match the colors. 
One time I went to an interview in the Department of Rehabilitation services for the blind and I wore a  blue shirt and dark brown pants.  It was casual wear.  I got chastised because one: the clothes did not match and two: they said I was supposed to show up as dressed for a mock interview. 


Wash clothes:
When I did wash my clothes I had marked a few places with red nail polish or used bump dots on the machines so I could tell where to set the dials with the dots that I could feel and or see with the red nail polish. Bump dots are clear silicone dots you place over any where to mark certain spots. There are colored dots as well that I use. 
Now my daughter does the wash and dry. I can wash some things out by hand in the sink. The reason is that I cannot bend over to get the clothes out of the dryer or cannot reach the bottom of the washer to get the clothes.  My daughters or caregivers have placed the clothes in the basket on my bed and I will sort the clothes in piles folded or the ones that need to hang up.  I put the dress clothes in the closet and the casual clothes in the dresser. I have had caregivers since 2004. 

How to take the bus, taxi and fly being blind
Equipment needed for travel across the street, across town across a few states…
I had the good fortune to use a power wheel chair from 2001 until 2011. One year it was in storage. So I have used it for 9 years. It finally bit the dust. Now I use a manual wheelchair, or sometimes a walker called a Rollator Walker. It has a seat and wheels and brakes. I have a standard walker as well as 4 kinds of canes. Blind canes and standard support canes which I use all at different times as needed when I am out alone or with some one. My daughter that I live with now cannot push me in the wheel chair as she has issues with her back and shoulders. My son in law does the pushing now when I need to use the wheelchair out side. I can walk if it is not too long. Mostly I prefer to sit int he wheelchair as it is more comfortable than the pews at church or the folding chairs. 

Why backpacks:
When I went out I had to pack like I was going on a trip even just to the grocery store. I have gotten stuck in traffic many times on the Paratransit bus.
I needed my hands to work the power wheelchair control and or hold my cane and have one free hand. So backpacks are the best to use to store all you items. 

Additional reasons:

Reason one: One time the lift on the paratransit bus did not work so I could not get off the bus with my power wheelchair. I had to ride the bus back to the bus barn where they had to put me on a cold bus while it warmed up. It was less than 30 degrees outside. They had to manually crank open the lift and get my power wheelchair out of the bus and put it on the cold bus where I was waiting. I did not have warm enough coat, hat scarf or gloves,  no food or water.  The temperature was freezing cold and snowing. It was 3 hours before I got home.

Reason two:
Before I needed to use the power wheelchair and used the city bus.
I was waiting in the dark for my bus after work. The bus driver drove right past me and I had to wait 30 minutes in the snow for the next bus in the snow. The second bus drove right past me and stopped a block past so he could take his end of line break. I had to walk down a block to where the bus was. It was a block where I had not had blind mobility training.
What little vision I do have is not much help in the dark. Fortunately I made it to the bus. He claimed he did not see me and that he was not suppose to stop where I was anyway. I did not have proper hat and gloves to wait in the cold and snow for 40 minutes. Thankfully I did have snow boots. After that I asked my boss to change my working hours. I got to go to work an hour earlier and leave at 4 pm when it was still light.

Cover all contingencies!

So I made a list of things that I like to have with me and cover all contingencies. Another reason I pack like a trip is: My sister in law was stuck in a small room in her office suite for several hours when the door jammed shut in the 1989 Loma Prieta Earthquake California 1989. She did not even have her purse with her. Since those things happened to me and her, I make advance preparations. I have food and water in my purse as well as my backpack. I keep my purse within reach at all times. 

I have three types of packs that I have and use for different occasions:
1] shopping pack
2] church and visits pack
3] work pack

All packs have the same basic items which I keep in a separate gallon ‘Ziploc’ bag I call the basic pack.

A. Basic pack: [my purse]
Mini flashlight, mini brush, some elastic hair ties for longer hair, my special sunglasses, extra batteries for all my electronics, a pen, paper, and paper clip [you would not believe what you can do with that!] some strong string, space blanket, small first aid kit, current medications for the day [more depending upon how far and long I plan to be gone] gum, mints, one set of earrings, chap stick type, small lotion, and small 10 pack of baby wipes. My wallet with cash in small bills and quarters [1's and 5's] and one blank check. Some places do not take ATM cards. 
The first aid kit, space blanket, string and some of the other items I keep in a smaller bag on the back of my power wheelchair.  We keep the firstaid kit and our emergency preparedness supplies for each family member ready by the back door if we need to bug out. There are additional supplies in the car. 

To that I add other things for each 3 separate pack listed above.

1] shopping/mini visit pack
I always carry water and food. I always put a protein snack and some dry fruit and crackers. I like the soft protein bars. 
I use the Rubbermaid 20 oz reusable water containers with a loop handle to hang on my back pack, purse or what ever.
That usually will hold me over for a couple of hours.  If I rush out of the house with out a meal then I will take a mini meal with me to eat on the go. It is best to eat before you go out especially shopping that way you will not be tempted to want to get a dough-nut that you probably should not be eating! I do not drive so I have this pack on my wheel chair or if some one else drives me it’s in my purse or mini back pack.  

2] church or visits lasting longer than 4 hours pack:
I will add extra bottle of water and 2 mini meals like in the basic pack. I add an extra sweater to that in colder weather, plus gloves, scarf and make sure I have good walking shoes. I cannot walk very far, but you never know what you will have to walk through in case of an emergency. In hot weather, I bring extra undies. If I was using feminine products I would add that as well. 
Add what ever items you normally use every day. But keep it down to survival mode.

3] Work pack [or gone all day]
To the above 2 packs I add whatever items I have to have for my job or school or whatever activity I am doing. Most of the time I brought my lunch with me. I also had several pkgs of dry instant soup, hot chocolate, and instant mashed potatoes. These foods can be reconstituted with warm water from any sink, of course best with boiled water.  Most of the jobs I had had a kitchen with a microwave where I could heat up foods and that is what I did.  Some jobs had a cafe where you could buy good foods. I would do that a couple of times a week. 

I had a co-worker ask me why I had so many bags. I told him since I had to be on the bus some times for 2 hours a day plus the 8 hour work day, and what had happened to me in the snow that one night, I wanted to make sure I was covered for all my needs. He never used the bus and always was driven or had his own car. He was very surprised why I had to take so many things with me.

Long term trips using the airplane

Of course I pack like every one else and again on my carry on I always have one set of clothes. Thank goodness I have never had my luggage lost of delayed. They did loose my manual wheelchair one time, story below.  I don’t like to live in the same set clothes for 2 days strait, [Ha!] so I like to have that extra set of clothes. I have the basic pack and the four hour pack. I extend that to add how many hours I am to be on the plane and travel time to and from my destination.

Usually I have 3 mini meals. I was diabetic and no longer have to use insulin or take any pills. However, I have to eat some protein and good foods every 3 to 4 hours to maintain my blood sugar. Gratefully I do not have to have insulin anymore, however if I did, I would make sure I had those supplies also.
There is No charge on the plane for wheelchairs, canes, walkers, CPAP machines, oxygen etc. You just have to let them know if you have oxygen.
The airport staff are great in helping me with my bags and equipment. I always add my name to the list as needing assistance. They will roll you in a wheelchair if you do not have one so you do not have to walk. Not that you cannot walk, but getting in and out of a busy airport is best by having this method of travel in the buildings.
The last time I flew they left my personal manual wheelchair at the airport.  I had a meltdown when I got to my first stop where I had to wait for the connecting flight.  I was on the phone and texting my two daughters as to what to do about it. The airport placed me in a transport wheelchair which was horribly uncomfortable. I ended up sitting in the waiting area chair until I got help. Finally, my manual wheelchair was flown to me and delivered to my home by midnight. The original agent tagged the chair wrong. They did say they were sorry. 

Basic survival packing The idea is to pack what every essential items you need for survival for the amount of travel time to and from your destination. Basic food and water are on the top of the list. Followed by clothing and shoes. I have dry skin and it is not always easy to find the specific lotions I need I so use the travel kit that is allowed in your carry on bag. Anything like at that which is specific to your individual needs, where you cannot find that an any corner store would be essential to carry with you always. The rest is fluff except medication.

Since they are still deciding if we can carry a small Swiss army knife [as of 2014] that is where the “Paper clip” comes in. It makes a good pokey thing to open those pesky plastic food bags like nuts on the plane! You can use it to clean your fingernails, and after wiping it with a baby wipe you can get a nut stuck in that space in your teeth out. I loved my Swiss army knife as it had a toothpick, tweezers and scissors! No need for the paper clip, but good to have for those reasons! I used to carry it with me always and it came in handy a lot.

So there you have it – traveling blind. I even have a folding cane in my backpack for emergencies. See below about What to pack for Emergency Preparedness.

Paper clip and 
72 hour kit - Emergency Preparedness



Emergency Preparedness
That link will lead you to a great webpage with lots of information. 
A photo/chart that pretty much has the basic list of what each family member needs for 72 hours. 

Why 72 hours??? 

Aside from disasters such as Katrina and Monster Storm Sandy, FEMA has stated it takes an average of 72 hours to get to any place in the USA with full supplies to help people. Have a kit for every one in your car, or place it in the garage to grab to go. 

I purchase quite a lot of items from Emergency Essentials They have just about anything you need for an Emergency situation when you do not have food, water, or power.


Links of agencies for services I received - medical description of my eye disease


Retinopathy of Prematurity eye disease
Retinopathy of Prematurity eye disease is the eye disease I have, detailed explanation of causes.

California Council of the Blind
California Council of the Blind (CCB) support group for the blind

American Council of the Blind
American Council of the Blind support group for the blind and visually impaired persons

Lions Clubs International
Lions Clubs International support and education fund raising and grants

LightHouse for the Blind and Visually Impaired
LightHouse for the Blind and Visually Impaired

National Federation of the Blind
National Federation of the Blind - detailed website support for the blind and visually impaired persons

Medicine and terminology and eye disease discussion
eye disease descriptions


I have more stories that are forthcoming that describe my school life before and after ADA help.  Coming Soon! 

I am open to answering any question you should have. If you have a link that you wish to have me advertise I will be glad to add it to my sidebar.