Wednesday, January 31, 2007

The Two Way Street

It's funny how even though I am only hard-of-hearing and legally blind, I am labeled "deaf-blind." It does not mean that someone who wears glasses to correct his or her vision and has a very mild hearling loss is considered deaf-blind. Only if your hearing loss is severe or profound and that you are legally blind (besides the obvious-being totally deaf and blind), then you are considered deaf-blind.

A fellow deaf-blind person wrote this article. It is long, but I couldn't have written it better-with my own perspective, of course. It gives further elaboration to the deafness or blindness issue that I posted just before this one.

Thank you, Greg, for permitting me to post this article.


© Greg Athanasopoulos 2006

Which is worse, deafness or blindness? A tug-of-war question between the Deaf and Blind communities for years. I am sticking my neck out here somewhat but that has been definitely one of my bad habits.

The answer on this as far as I am concerned comes in two and I will be looking into the situation from the perspective of a Deaf and Blind person. Due to the unfortunate health problems, I now find myself as well part of the Deaf and Blind community. Verbal communication is one of the most important things for everyone, and how much smaller and sheltered the world becomes without that ability? Regardless of the visual problems even as a totally blind person, one is still capable of communicating verbally with the world around them as long as they have some hearing left. Also a totally deaf person experiencing severe limitations with vision, find themselves very much closed in a small community of other severely hearing affected people, communicating with such things as finger spelling and sign language. Unfortunately limited becomes their communicating world because of this and without much doubt in such a situation I would say deafness is much worse. Separately deafness or blindness, here is where the answer changes and I would say blindness is much worse. Let me explain here my reason for this. A totally deaf person with full vision is still capable of doing many things a blind person cannot for example driving a car, very essential in our modern society. Also with full vision the ability to read lips is there, so their communication level increases as they would be able to communicate with virtually everybody. Modern technology is making those benefits even greater with the introduction of the Cochlear Implant. On the other hand, a legally blind person but still with full hearing, finds themselves much more limited compared to the options available to a deaf person with full vision. The answers here include both disabilities and although it may look as if I am walking with a foot on either side, most people would be able to understand here the explanations I’ve given.

Thoughts of experiencing any major health afflictions, is something that leaves a person fairly horrified, for it would be difficult to associate with such major health problems. The magnitude of Deaf Blindness is definitely one of those severe experiences. The human ability to adjust in life with environmental or personal difficulties though is something we often take for granted, possibly because of that adjustment taking place after a while, as we continue walking along life's road. It is very true also that the older the person experiencing that health problem for the first time, the greater the adjustment difficulties. It becomes very much an internally concentrated issue with numerous unanswered questions for example, what is the reason behind me experiencing such a horrific health condition? What we tend to forget to consider when judging people's attitude and behaviour is when did that health problem occur? What I am expressing here is something that becomes a little difficult to understand without that personal experience. A person born with either one of those health afflictions or both wouldn't have had, unfortunately, the opportunity of fully experiencing them. In other words, you never miss what you’ve never had. When I first joined the Deaf Blind community, one of the surprises was the many smiling faces among totally deaf people. My immediate thought was "How can they smile when experiencing such severe health problems?" Although the answer may come across a little hard for some: "Out of hearing, out of mind". Here is a lesson we can all learn from. Reaction often in various ways takes place from hearing or visual observation. Attending the Blind School after losing most of my vision at a young age, I was surprised how fearless the many blind children who were born totally blind were. Here is an example. Every weekend the children remaining at the school for the blind were taken on various adventurous outings at the countryside. I often took advantage of this by staying in on the weekend. One particular weekend we were taken bushwalking, a favourite pastime very much enjoyed by many Australian citizens. This particular weekend was early in my introduction to this new lifestyle and I was quite unaware at the time of the permanence of it. Lost in the vastness of creation, we were made to walk through an extremely thick bush area along a cliff face with at least a 200 yards drop. This involved only holding on to bushes on the side of the cliff. Now, even Tarzan would have second thoughts of doing such a thing! For blind children though, unaware of the visual experience, fear never had a chance of setting foot. Here again another little quote to put to memory: “Out of vision, out of mind."

What a wonderful miraculous thing it would be for a person to receive their hearing or vision for the first time! In many ways I agree with that, it would be a truly wonderful experience, but???? I can see some of you saying, “Not again, what are the problems this time?” Don’t get me wrong, it’s a wonderful world we are all living in full of scenes and sounds we learn to adjust to from childhood days. The absence of all these things throughout life does create pressure and stress on a person. I am speaking here from some personal experience. However, for a person hearing and seeing all these things we classify as part of life for the very first time, what a shock it would be when used to living in a silent and imaginary world for many years. Something that comes to mind here from a popular song in the last century, ‘Silence is golden’. Here is a true story of such an event: A totally deaf person was successfully given a Cochlear Implant operation with the opportunity of hearing for the very first time. That person couldn’t handle the extremely noisy world he was experiencing so he took the Cochlear Implant hearing aid off and returned to his peaceful and silent world communicating with sign language like he had done for years. Prior to a person receiving vision for the first time, one tends to adjust to the world around them by using the sense of touch, which is the best alternative when lacking vision. Never being able to see before one tends to create their own mental images of what they are touching. There was a story of a lady in London receiving her vision for the very first time, here again for many of us what a wonderful thing but for them nothing but a nightmare. She explained in her book that at the start when receiving some vision for the first time that unless she touched such things as cups or plates on the table she had no idea what they were. She also expresses of her great surprise when looking out the back door and seeing a bird on a tree branch. Things we tend to take for granted but for them though every day is nothing but full of exploring and new experiences. Now here is the frightening part, never having vision before one would not be aware of the silent world around them. Walking along the street for the first time, would be the most fearful experience ever in their life, as trees, posts, houses etc. would look as if they are moving towards them with every step they take. Again, something we tend to take for granted after losing some vision and adjustment starts to take place as we walk along the street or inside our own house. For them however, it is nothing but a nightmare for a long time, while their system is slowly adjusting to their new way of life. Under such circumstances, beauty is not necessarily what it is for many of us.

Many more restrictions in various ways, do settle in a person’s life with the experience of disability. The more severe the disability, the greater the restrictions. Socialising is one of those problems and huge changes for that person do take place when confronted with something fairly dramatic at the time and often quite permanent. I will be expressing here something quite realistic, although I am sure some of the people without a disability, would speak strongly against it and show their personal concerns and support towards disabled friends. 'Superficial judgements' are something unfortunately we all tend to participate in, some more than others. A person doesn’t stop being part of humanity as a human being simply because of the disability whether sudden or from birth. That person very much still has those same needs as another living being and in reality greater are those needs because of that unfortunate health affliction. The emotional love factor is Universal and the restriction of this emotion does create many problems throughout life. When next confronted with a person experiencing a disability always remember they are just as human as you but travelling with a somewhat damaged vehicle in life. Be aware of your reaction towards the situation at the time and always keep in mind this famous little quote from the Bible: “Do unto others as you would have them do unto you". Emotionally there are not many other greater pleasures in life than the self-satisfaction and acknowledgement at the end of the day of having assisted in making life easier for another human being.

As Deaf Blindness is a combination of two severe disabilities, smaller is the number of people afflicted. Here in Australia there is a Deaf and Blind Association [DBA] in every state representing and assisting people with these disabilities. In many ways I am truly grateful for the opportunity of being in Melbourne at such a dramatic period in my life, to receive the Cochlear Implant and the ability to hear once again. The Deaf and Blind Association [DBA] here in the state of Victoria did also provided moral support for me during this difficult period, while the hearing was deteriorating fairly quickly. Although the representation of the various DBA organisations around Australia exists in every state, limited is that assistance due to the lack of financial support from the various state governments. The DBA here in Melbourne, to express it in this terminology, are head and shoulders above any other Deaf and Blind Association in this country. The reason for this is back in the 1960’s the parents of Deaf and Blind children here in Victoria got together and approached the state government for assistance. This was a positive step which saw the gradual development of the DBA becoming what it is today. For sure I could not have coped with all these problems without the tremendous assistance from the Eye and Ear Hospital and the DBA. Whenever we find ourselves with the opportunity of assisting another person, do see it for what it really is; not necessarily only providing important and necessary assistance for that particular moment in time. How true is the belief that nothing happens by accident.

Tuesday, January 30, 2007

Deafness or Blindness?

If you had a choice, which would you choose?

This topic came up in a discussion thread on one of the deaf-blind mailing lists I am on.

My answer was, as usual, that I would rather lose all my hearing than go blind. I was born hard-of-hearing. I am used to the frustration of dealing with hearing loss. I have a TTY (teletypewriter text phone), Sonic Alert, and hearing aids. I also know Signed Exact English (SEE) sign language. I can talk like a hearing person. I get by. I always considered myself an in-between-not quite fitting in the Deaf world and not quite fitting in the hearing world, either. I am culturally hearing, though.

I can be honest and say that I am scared of going blind. I don’t want to think about it. I want to push it away and pretend that it’s all in my head. All I need to do is pinch myself and find it's all been a nightmare. I didn’t have vision problems till I was in my mid-twenties. Back then, it was soooo easy to ignore it. But as the peripheral vision moves stealthily, tapering off the edges of my vision more and more, I can’t blame the little gopher (If you’ve watched Caddyshack, you’d understand this.) for sneaking into the house and moving things around. I have to scan more to make up for the loss. But, ironically, as more and more of my vision makes a disappearing act, I want to hear better, too.

Some people with Usher Syndrome retain central vision for a long time, sometimes well into their 60s. I hope I am one of them.

As I said in a previous post, I still feel like I am in-between, but this time, I am not blind, but I have limited vision. I just can’t win.

These are comments by the others:

Blind people are more relaxed than deaf-blind people. Deaf-blind people have more pressure.

Helen Keller thought that deafness was the greater disability. (It was her perspective.)

Someone born blind would perceive deafness as the more “difficult” disability…and visa versa. Deafness, blindness, and deaf-blindness aren’t as limiting as it was 20-30 years ago.

Someone who lost his or her sight adventitiously might think that blindness is the “worse” disability because they no longer can drive and need sighted assistance for shopping, errands, mail reading, alternative techniques for independent living (cooking, laundry, etc.). For someone who just lost his or her hearing later in life, he or she would feel that deafness is the “worse” disability, because of the inability to hear on the phone, hear without an FM system, hearing aids, or the CI (cochlear implant). If a totally deaf-blind person were asked which disability was worse, it would be difficult to make a conclusion.

There are many Deaf people who are proud of their deafness and do not consider it a disability. When Deaf people think about blindness, they think about being unable to drive, rely on sign language visually or lipread. To them, it would be devastating, if not more, than being unable to hear. It’s all a matter of perspective.

It depends on one’s situation. When was the onset of deafness or blindness? And it’s one thing when we talk about deafness or blindness,,,it’s another when we talk about deaf-blindness. The sum of deaf and blind reads 3 + 3 = 3000. When you are deaf, you depend on your eyes A LOT. When you are blind, you depend on your ears A LOT…but if you are deaf-blind, you depend on your endangered sanity A LOT.

Monday, January 29, 2007

Life is a Gift

Another thought-provoker. When you are down and out and think things couldn't get much worse, think about others.

When I feel depressed about why I have to live in a partially-deaf world along with the double whammy of progressive peripheral vision loss, I think about others who are worse off. How do they do it? How do they stay strong? We are all human and live with our own tribulations that can only strengthen or break us. You have a choice to deal with it and stay positive or pity yourself and give up. You only live once. Find alternative solutions. Do something you enjoy. Do something that makes you feel good about yourself despite the hardship. I always have thought about this off and on. I should be thankful for the things I do have. How about you?

Here is another email I want to share with you.

Life Is a Gift

Today before you think of saying an unkind word -
Think of someone who can't speak.

Before you complain about the taste of your food -
Think of someone who has nothing to eat.

Before you complain about your husband or wife -
Think of someone who's crying out to God for a

Today before you complain about life - Think of
someone who went too early to heaven.

Before you complain about your children - Think of
someone who desires children but they're barren.

Before you argue about your dirty house, someone
didn't clean or sweep - think of the people who are
living in the streets.

Before whining about the distance you drive - Think
of someone who walks the same distance with their

And when you are tired and complain about your job -
Think of the
unemployed, the disabled and those who wished they
had your job.

But before you think of pointing the finger or
condemning another - remember that not one of us are
without sin and we all answer to one maker.

And when depressing thoughts seem to get you down -
Put a smile on your face and thank God you're alive
and still around.

Life is a gift, live it, enjoy it, celebrate it, and
fulfill it.


~Author Unknown~

Thursday, January 25, 2007

Driving the Demons Away

I got my diploma in the mail yesterday. It doesn't seem final, though. I still want to acquire another certificate yet.

I only intend to work part-time and searched for local job openings online. (I don't see them advertising in the paper and most of those jobs are interoffice-meaning you have to be already working there and apply/bid for a different job if you wanted to).

But I didn't find anything I wanted. Nothing. Nada. There are some interesting job openings in a city a half an hour away, but I gave up driving (to some people's relief, including mine). I don't relish the idea of getting a taxi driver to drive that distance (any money I earn would pay the taxi fare-kind of moot point). So there I sit. I don't live in a big city like Chicago or New York where I could take subways to commute to work. Besides that, I think it's rather scary (too much homicide-watching on TV, I guess).

I am feeling like maybe I should just find another factory job nearby where the pay sucks. The one place I know that may hire part-timers (I heard from someone that you can make your own hours and work for four or five hours a day.) That sounds good, except that I would be wasting the education I just acquired. Besides, they aren't hiring right now anyway.

This is the main reason why I am trying to get another certificate. I don't want to be put in the front office answering the dreaded ringing thing called a telephone. I could get people frustrated with me if I don't understand everything they say. Just put me in the "behind the scene" office area where I could do paperwork and filing. I really don't mind the "library" type of work. Time passes quickly.

You would think that many employers would like to hire part-timers so that they don't have to pay for so many fringe benefits (vacation, health insurance, etc.)

All I would have to say is that I am hard-of-hearing and visually-impaired and then see how fast my résumé will be thrown into a wastebasket after the interview. Someone else would be more "qualified."

There's too much maintenance with hiring people with disablities. (Wider doors and entrances, special technology for visually-impaired workers, and the continuous need for sign language interpreters for the deaf employee) That all comes out of the employer's pocket in most cases. But then, you are still a walking liability-too many "dangerous" things could happen.

I am sure that there are some good employers out there that are equal opportunity, but it just seems that they may be far and few between.

I am only half-hearted looking for jobs in the field I am studying. Maybe when I see something that looks interesting, I'll apply. It has to be local, though. Preferably within walking distance.

I am only sorry that I didn't get serious about college when I was younger. I was young and wanted to have spending money. So I worked. Then I got stuck in a factory job that paid the bills. Then I got married and had a child. Then I was a single mom taking care of a toddler. I got remarried and had another child. There was no money or time for schooling.

Maybe when the time is, this is not an excuse. Then again, I really haven't worked for three years. The vision I had three years ago is not the same. I am nervous about places I haven't been to before. Yes, ironically, I am scared to get back into the workforce. I am sure that if I did start working somewhere that I would do just fine. It's just the fear of the unknown. I have wrestling matches in my head all the time.

I know that there's the Disablity Act to help those who have disablities, but I still worry. There are loopholes. If someone were more "qualified," employers don't have to hire you.

I still have some nagging self-doubts (demons of the mind). I should be more comfident and positive. I'll keep you posted. In the meantime, I still have some more schooling to complete so I can be more qualified to one area of work that doesn't require telephone use. Hopefully there is a job out there that would let me do what I learned to do, but it probably would have to be in a large facility so that there will be others who can take care of the phone. We'll see.

Sunday, January 21, 2007

Girl Talk

The other night, as I was cleaning up after supper, my oldest and I had a nice chit-chat about everything and anything under the kitchen light.

My youngest, hating to be left out, pipes in every once in a while with a comment totally off-topic. She wanted to be a part of the conversation. I am still working on her "interrupting" behavior. She complains no one is talking to her and she can't get a word in.

I try to keep her involved in our conversation.

We talked about school. We talked about clothes. She talks about her dad and his new girlfriend. Then she (the oldest) says, "This is fun. I like talking to you like this, Mom. We should do talk like this more often."

I am thinking that perhaps we would stay close when she's all grown-up. That would be nice. I want them both to be able to come to me about anything. I want to be approachable. I can be a fun mom.

Then the oldest says something I don't approve of. I become the mom again, not the "friend."

A little bit of whining ensues. Some pouting and arguments (the kind that is supposed to change my mind about things).

We agree to disagree. But mom rules.

Sometimes it's tough to be a parent, but I am a parent first, friend second.

Thursday, January 18, 2007


This is the picture of me on my driver's license. It looks like a mug shot. (When it expires, I will get a state ID card. For now, it's just for indentification purposes.) I can't buy alcohol without it. Once in a while, I like to buy some wine coolers and sit out on the deck. I am not much of a drinker, though. (There's a company policy at the local grocery store-you have to show your ID no matter how old you are. Even if you are 90 years old. Everyone gets carded.) It's like, do they think that teenagers put on make-up and put baby powder in their hair to look older? I guess this is the store's way of insuring that it does not sell any liquor to minors.

I didn't even notice the "Wisconsin" written over the eyes in the "mug shot" until I scanned it (and covering up the information around it). There was no way I could erase it.

But as I become more suavy with the computer and the HTML of blogging (challenge, challenge-a topic for another day), I will add more pictures of my family.

Just wanted to give you a gist of what I looked like. The earlier picture of the one with my sisters was a little dark.

I've Got Style

I was tagged by Sara. I have to make a list of 10 things that define my style. I really like how Sara made a theme of shoes and boots with hers. I hope I did this right.

Defining my style:

1. Family: I love my family. I love my girls. I love my husband. I love my siblings. I love my mom. Family is important to me. They’re always there to listen, to support, and help me and each other.

2. Hugs: I like to hug the people I am close to. It’s like an adrenaline booster shot. It’s my way to show I care.

3. Chocolate: I have a weakness when it comes to chocolate. I often hear chocolate call my name. It’s a soothing, rich-flavored comfort “food.”

4. Comfort: I like being comfortable. I always wear jeans or sweatpants. And a good pair of running shoes that fit well .I don’t like to dress-up for too long. I rarely wear make-up.

5. Hearing aids: I wear HAs every day. I cannot hear very well without them. It helps to amplify sounds so I can distinguish them better. I still have problems with low voices (mostly male). I like to listen to the leaves rustle in the wind. I like to hear a child’s giggle. I like to listen to a dog’s excited bark. I like to listen to soft rock, country, and music of the ‘80s. I am glad I am able to enjoy these things.

6. Walking/exercise: I want to stay healthy. I believe this is the most important thing I can do for myself. Heart disease and adult-onset diabetes run in the family. I want to take care of my body.

7. Reading: I love to read. I like reading other blogs. It’s like opening a door to another world, another life far different than my own, though it seems like we are alike in a lot of ways.

8. Writing: I like to write poetry. It takes some time for me to create one, but if I think about it, it comes together. It’s like someone (perhaps an angel?) whispered in my ear and helped me water the seed and make it grow into a poem. I love blogging. It gives me an outlet to hone my writing skills and share the blogging world my thoughts and frustrations.

9. Dogs: I have had dogs as pets for as long as I can remember. I lived out in the country on a small lake. I loved walking the dogs and swimming with them. They were, for the most part, well-behaved. I would like to get a dog again, but one that is house-broken. I don’t have the patience for potty-training. I just love dogs, though.

10. Soft-hearted and Laid-back: I am a real softie. When I get to a sad part at movies or when reading a book, I cry. I “ooh” and “ahh” over babies and baby animals. I am easy-going. I am not the kind of person who blows up at every little thing that goes wrong.

I tag Sue, hillgrandmom, and Amalia.

Wednesday, January 17, 2007

Why Dogs Don't Live As Long As People

I got this as an email. (Lately I have been getting good ones!)

Why Dogs Don't Live As Long As People
Being a veterinarian, I had been called to examine a ten-year-
old Irish Wolfhound named Belker. The dog's owners, Ron, his
wife Lisa, and their little boy, Shane, were all very much
attached to Belker and they were hoping for a miracle.

I examined Belker and found he was dying of cancer. I told the
family there were no miracles left for Belker, and offered to
perform the euthanasia procedure for the old dog in their home.
As we made arrangements, Ron and Lisa told me they thought it
would be good the four-year-old Shane to observe the procedure.
They felt as though Shane might learn something from the

The next day, I felt the familiar catch in my throat as Belker's
family surrounded him. Shane seemed so calm, petting the old
dog for the last time, that I wondered if he understood what was
going on.

Within a few minutes, Belker slipped peacefully away. The
little boy seemed to accept Belker's transition without any
difficulty or confusion.

We sat together for a while after Belker's death, wondering
aloud about the sad fact that animal lives are shorter than
human lives.

Shane, who had been listening quietly, piped up, "I know why."

Startled, we all turned to him. What came out of his mouth next
stunned me. I'd never heard a more comforting explanation.

He said, "People are born so that they can learn how to live a good life
like loving everybody all the time and being nice, right?"

The four-year-old continued, "Well, dogs already know how to do
that, so they don't have to stay as long."

Live simply. Love generously. Care deeply. Speak kindly.

~Author Unknown~

Thursday, January 11, 2007

At Your Service

Update on Service Dogs:

I was given an anonymous tip about guide dogs for the deaf/blind. This was great information.

There are guide dogs for the deaf/blind. They are taught ASL (American Sign Language) along with the basic hand signals.

The anonymous email had information from the Leader Dogs for the Blind website.

Thank you, Anonymous, for this tip.

However, it doesn't say that the dog is trained to alert a deaf-blind person the telephone ringing, doorbell, smoke alarm going off, etc.

Wednesday, January 10, 2007

Service Dogs

There are many uses for service dogs besides guiding the blind/legally blind. (I don't claim to be an expert. I ask or look up a lot of information.)

Service dogs are also used for special needs people (autistic, wheelchair-bound, deaf/hard of hearing, etc.)

Some dogs are trained to assist the police by finding missing people or narcotics.
Others visit nursing homes and similar facilities to brighten up a patient's day.

I guess because I was hard of hearing myself, I have heard of service dogs for the deaf/hard of hearing. These dogs are trained to alert the deaf person of smoke alarms, doorbells, telephones, vehicles that are coming, and even a baby crying. There are light signaling systems, too, that can alert a deaf person when the doorbell/phone rings. Or when a baby cries. Or when the smoke alarm goes off. But those signals don't help outside the home.

For autistic children, some service dogs offer companionship and helps the child open up more. Here is a heartwarming article on it.

A question was asked about guide dogs for the deaf/blind. Are there service dogs that are trained especially for the deaf/blind? The answer that was given was no. Which service dog would be in the best interest in this situation? A service dog for the deaf or blind? A deaf/blind person gets a guide dog for the blind.The reason for this is because a quide dog is working when the harness is on. When the harness is off, the dog is on a break. It would be too much work for the dog to do a double duty and the dog would always be working. It wouldn't get a chance to rest. If there is anyone out there who can elaborate, I welcome it.

When a guide dog is working there are rules to follow:

1. Ask first if you may pet or speak to the dog.

2. Don't take it personally if the handler says no. The dog's priority is the blind person.

3. Don't give the dog any treats or toys.

4. Do not interfere when the handler is correcting the dog. When the blind person attends the training school and given a guide dog, they are taught how to correct the dog when it makes a mistake. If you think the handler is mistreating the dog or not handling it right, call the training school.

5. Do not distract the work of the dog by grabbing its harness or standing in its way.

6. Ask if the blind person needs help. Do not grab the person without permission. If the person does want assistance, let him take your arm and follow you. Don't push or pull him around.

7. By law, guide dogs have special rights. They should be able to enter public places. If you deny access, you may be breaking the law. Graduates of Guide Dogs for the Blind, Inc., have ID cards. If you doubt that the dog is a certified guide dog, ask to see the card.

(Another source:

I think that children should be taught this in schools. Maybe someone could be invited to schools to demonstrate what guide dogs do. And rules of what to do when you see a guide dog. Many children want to pet dogs. They love dogs. (My children included.) I always tell my children to ask the owner if they can pet the dog. Always.

Maybe even a demonstration of what other service dogs do.

I am sure some schools have assemblies for this, though.

If it would increase the awareness of what the dog's duties entail and why it is necessary to understand the reasons why it shouldn't be distracted, then these children will grow up to be conscientious adults who respect what guide dogs do.

I have heard of people grabbing hold of a blind person's cane to guide them in the right direction. This is also a big no-no. I firmly believe people need to be educated on this stuff.

Sunday, January 07, 2007

New Year's Trip

I got this in an email. I had to share this. Anybody who needs a little "pick-me-up" pep talk can relate to this.

I had not really planned on taking a trip this time of year, and yet I found myself packing rather hurriedly. This trip was going to be unpleasant and I knew in advance that no real good would come of it. I'm talking about my annual "Guilt Trip."

I got tickets to fly there on Wish I Had airlines. It was an extremely short flight. I got my baggage, which I could not check. I chose to carry it myself all the way. It was weighted down with a thousand memories of what might have been. No one greeted me as I entered the terminal to the Regret City International Airport. I say international because people from all over the world come to this dismal town.

As I checked into the Last Resort Hotel, I noticed that they would be hosting the year's most important event, the Annual Pity Party. I wasn't going to miss that great social occasion. Many of the towns leading citizens would be there.

First, there would be the Done family, you know, Should Have, Would Have and Could Have. Then came the I Had family. You probably know ol' Wish and his clan. Of course, the Opportunities would be present, Missed and Lost. The biggest family would be the Yesterday's. There are far too many of them to count, but each one would have a very sad story to share.

Then Shattered Dreams would surely make an appearance. And It's Their Fault would regale us with stories (excuses) about how things had failed in his life, and each story would be loudly applauded by Don't Blame Me and I Couldn't Help It.

Well, to make a long story short, I went to this depressing party knowing that there would be no real benefit in doing so. And, as usual, I became very depressed. But as I thought about all of the stories of failures brought back from the past, it occurred to me that all of this trip and subsequent "pity party" could be canceled by ME! I started to truly realize that I did not have to be there. I didn't have to be depressed.

One thing kept going through my mind, I CAN'T CHANGE YESTERDAY, BUT I DO HAVE THE POWER TO MAKE TODAY A WONDERFUL DAY. I can be happy, joyous, fulfilled, encouraged, as well as encouraging. Knowing this, I left the City of Regret immediately and left no forwarding address. Am I sorry for mistakes I've made in the past? YES! But there is no physical way to undo them.

So, if you're planning a trip back to the City of Regret, please cancel all your reservations now. Instead, take a trip to a place called, Starting Again. I liked it so much that I have now taken up permanent residence there. My neighbors, the I Forgive Myself and the New Starts are so very helpful. By the way, you don't have to carry around heavy baggage, because the load is lifted from your shoulders upon arrival. GOD BLESS you in finding this great place. If you can find it -- it's in your own heart -- please look me up. I live on I Can Do It Street.

-Author Unknown-

Tuesday, January 02, 2007

Closed In

I don’t want you to think I am unreasonable. Or selfish. I am just telling you how I feel. It’s not like I carry a big chip on my shoulder. I am a friendly person. I can be considerate of others. I have been re-reading this post and trying to see how another person reading this will think. But this is just something I feel. I can’t change that.

Narrow spaces and hallways never bothered me before. I just walk through.

Now it seems that the narrower my field of vision gets, there’s an almost a claustrophobic-like feeling to have to walk through a narrow hallway. I want to tuck my arms against my body in a protective way and walk a little bit more slowly. I feel like I must stay in the center of the hallway. I feel closed in. I am scanning all over-watching my feet, watching for anything that may be against the wall. A chair? A printer on some sort of stand? Anything. I feel funny as some sort of “flight or fight” defense mechanism sends warnings to my brain of danger of bodily harm.

If I walk in a larger hallway, if it’s empty (hardly anyone or anything in the hallway) I will be confident. I will stay in the middle, though, in case someone does come out of a corner or doorway. But if there are some people walking, I want to slow down and stay closer to the edge. It just depends on the traffic.

Those who know about my Usher will turn around and glance at me. They worry I will hurt myself.

I get resentful. I resent having defective genes. I resent people treating me like a handicapped person. I do not like this at all. I don’t want to feel this way. I hate it.

I try to stay positive. I try to keep things light.

There are days I carry a dark cloud of depression around me. Just hating what is happening. Hating the way people look at me. Other days I am flippant, confident. I either put up a good front or I am strong. I am ME.

This is a frustrating eye disorder to live with. There are constant adjustments-major life-altering adjustments, such as giving up driving privileges and making changes to make things easier for me. The worse is losing the independence.

Sometimes I think that I should feel lucky because I am not going blind overnight. I can still enjoy looking at things and do things. But sometimes I think it must better to lose it all than to deal with the constant adjustments. The constant changes in my vision. But I know, deep down, I do want to see. As long as possible. Hopefully forever.

I hate it when others think I am worse than I am. That I need help. I only want guidance when it’s dark out or in dark places. I don’t like it when someone wants to take my hand and guide me when it’s not dark. It makes me feel like a liability-an accident waiting to happen. Sometimes I let them take my hand only because I know it makes them feel better so I just swallow my pride. Why make a big deal out of it? It just makes them think they are keeping me safe. I tell myself to just let it go. They can't see through my eyes and see what I see. I've tried to describe it the best I could. It's hard for them to imagine. But I can say that the brain seems to fill in the space that I can't see so that it seems like I can see more than I really do. Maybe that comes from scanning. You know it's there.

I understand. I really do. Maybe if I were old, it wouldn’t seem so bad to me...maybe. (Now that I think of it-it must be hard on the elderly to have to depend on others-knowing that they were once able to do things effortlessly, but their bodies are older and can’t do certain things anymore.)

Not everybody treats me this way. But for those that do, I just feel paranoid.

If I watch the doorway as I come to it, I can pass through it. If I get distracted or someone talks to me before I walk through that doorway, I get disoriented and need to look for the doorway so I don't bang into the doorframe. It's that "distance thing" I like to call funnel vision (someone else thought of it and I love it because it's so true).

Please let me keep my dignity. I am not totally blind. I don’t like to call attention to myself. I can read 12 font size just fine, though I have moments I may have to read it again because I am not paying attention. That can happen to anybody. I can get around. I don’t even use the cane (yet). I still have central vision. I can see distances. I have a harder time seeing things up close. My "blind spot" is much wider and noticeable the closer things/people are. I may scan more to make up for the field of vision that is lost-look at my feet, dart my head from side to side for any obstacles, and repeat the action-over and over. I cannot always keep looking straight ahead like people with normal vision because they have more peripheral vision than I do, thanks to the killer DNA genes that send self-destructive messages to the rods and cones and photoreceptors of my eyes.

Just keep your distance. That’s all I ask. (“Distance” with help, but also “distance” because I see better when something/someone is farther away.)

I am the “touchy-feely” kind of person. When I laugh, I want to put my hand out on the other person’s upper arm. When I see that they are sad, I want to touch their upper arm. I don’t know why I do this. (It seems ironic that I can be like this, but want my distance when it comes to my Usher condition.)

If I want help, I’ll ask.

I feel closed in enough as it is.