Being visually impaired is like living in two different worlds, yet not really belonging in either one. We are not totally blind, nor are we completely sighted. Most people categorize us as blind, lump us into one group of people, with the usual misconceptions, and a few added on.

Some people have the strangest notions of what blind people do, from the food they’re allowed to eat, to the very way they think, hear, behave, and live.

Many can’t understand there is a middle ground of visual ability, where there is some sight, though it isn’t perfect. Most healthy people can’t understand that having impairment doesn’t prove a lack of ability to function efficiently.

Just because we may require some help, and a few special tools, this in no way means we are less able to achieve great things. The visually impaired are not blind, we are partially blind, partially sighted, have “low vision,” or are visually challenged.

Many of us are classified as being “legally blind,” which is a specific measurement of actual sight that makes us eligible for SSI, (Supplemental Security Income).

Those of us, who are legally blind, cannot drive. This makes life more challenging, in not being able to get up and go whenever we want to. We are legally allowed to use the same white cane the totally blind use, the one with a red section painted near the bottom, above a white tip.

This cane tells those who can see that we cannot, or not very well. We hope they’ll will notice us and be careful. They see this cane, with its special reflective quality, shining in the light, and think we can’t see at all, even if we wear glasses. Often they’ll honk loudly, as if our hearing weren’t very good either.

It’s strange how some people think we hear better, while others think our hearing is worse. If we walk in a fairly “normal” way, some will yell at us that we’re not really blind, while others will make rude remarks about how blind we are.

For those of us who have visual and hearing loss, life can be even more frustrating, as well as being caught between the world of the sighted and the blind. Because we have some vision, people think we understand things like hand gestures, facial expressions, eye contact, and other body language.

They’ll give directions in terms of the nearest highway exit, or main street, and assume we know exactly what they’re talking about.

One time while I was grocery shopping, a man asked me if I can shop for myself. The question threw me off guard, and made me angry. I replied honestly, yes, though my tone showed I was insulted, and I walked away.

Later on I regretted being so upset, thinking I portrayed a bad image of us, and have been more careful with my responses about my disability most the time.

If that happens again, I’d explain that we have visual aids other than glasses to help us see, and sometimes people are uncomfortable around us while we’re using them.

I wear my monocular and magnifier on a belt when I go out, and one day two people talked about them to each other, but didn’t ask me about them, as if they were afraid of me.

My monocular, which is like a small telescope, helps me see far away, which is
adjustable, like the binoculars people use for various distance activities, such as bird watching. Sometimes people think it’s a camera, and get paranoid.

Occasionally someone will ask about it, and I gladly explain, even letting them look through it. Children really enjoy doing that. People only know what they’re told, and often accept, without question, information as fact.

When we’re able to put our anger aside, and gently explain to them about our condition, in terms they can understand, they often lose their fears and see us in a whole new light.

I’ve done this successfully, and have a list of suggestions we can use to help us educate them and show them what we’re truly capable of.

It won’t work all the time, but when you are successful, it’ll help build your self confidence, as it did mine, and you won’t be as afraid of them as they may be of you.

Use your intuition to know whether they’re approachable, be positive and polite, and who knows, you may even make a friend!

1. If someone yells insults at you, ignore them. They want a reaction, no matter how informative your response is. I’ve tried responding and it got me nowhere. Don’t waste your time, or lower your pride, dignity and self worth to give them
the satisfaction of a comeback.

2. When someone directly asks you a question about your disability, they are scared, but their curiosity was even stronger.

Ignore their fear and gently explain, for example, why you wear glasses, what your visual aid does, how your cane, dog, or any other assistance you have, helps you get around, do things, and be independent.

Also mention daily activities and interests, such as food, music, movies, computers, and books. This will show you have something in common with them, and will soften their uneasiness.

3. If someone offers to help you and you don’t want them to, be polite, and say, “I really appreciate your kind offer, though I’d like to do it myself, but if I need any help, I’ll gladly ask you.” Sometimes this may backfire, as peoples’ egos are so big, they get insulted that their good intentions were rejected, and may become very angry.

At this point, you must ignore them. Defending yourself will usually bring more anger than understanding, though I’ve tried, and failed. It doesn’t mean you’ll fail all the time. This happened to me on a bus, and, although I explained, it did me no good. Do what you feel is best.

4. Unfortunately, peoples’ attitudes are difficult to sway. Keeping a calm disposition, being polite, acting professional in situations that call for it, at workplaces and in dealing with those in authority, will show them you are confident, dignified, capable, and independent.

One time in a diner, a waitress offered to take my tray, I was in a bad mood already and snapped at her, which I shouldn’t have done, but told her I could do it myself. My friend told me later, he heard her say she admired my independence.

5. Many people are surprised when they see us doing things they don’t think we’re supposed to do, or are capable of doing. Someone once said to me, as I walked by with my cane, “My, you do get around well, don’t you?” I don’t recall replying, though I may have acknowledged her, while trying to hold in my anger.

Her tone was very condescending, as if she were shocked that I could do so well on my own, and I didn’t appreciate it. Emotions are often so strong; they get the better of us.

It’s sad that we do have a lot of anger about these things, and, though it is understandable, letting the world see that side of us only sharpens their distasteful views of us. We can release our feelings in other ways, when we’re alone.

Creative expression is a great way to channel them, as well as reaffirming our abilities. We need to focus on what we CAN do, regardless of our limitations.

Whether we’re blind or partially sighted, we must stay in touch with our positive qualities. Although we may feel the need to prove ourselves to others, we must first prove to ourselves we are capable of living a meaningful and productive quality of life.
What advice what you give in these situations? Email us at nathasha@audacitymagazine.com and join the Online Forum. ]]> http://www.audacitymagazine.com/2008/08/28/between-two-worlds-being-visually-impaired/feed/ 0 http://www.audacitymagazine.com/2008/07/28/dr-andrew-john-kramer/ http://www.audacitymagazine.com/2008/07/28/dr-andrew-john-kramer/#comments Mon, 28 Jul 2008 13:16:57 +0000 Sean Dineen http://www.audacitymagazine.com/?p=545 The physical therapy movement at its best is the result a small cadre of men, and women who refused to coincide all of us, to eternal childhood, or drugged isolation.

Against the advice of the experts, they forged ahead.

I would like to tell you, about the one it what my privilege to call mentor and friend for twenty five years.

Dr. Andrew John Kramer, was a practicing
physical therapist for 70 years.

Born in Perth Amboy, New Jersey, Nov, 23, 1912, He grew up, caring for a sister with cerebral palsy, at a time when there was
next to nothing known about it.

At the age of 16, the sister passed away, having been set off to a warehouse of a hospital. Andrew Kramer, made a vow, he was going to change that.

There were no organized programs in those days, just informal partnerships. He began, following the great men and women, in and out of medicine of that era, cereal tycoon John Kellogg, massage expert, Frank Lorenz, the creator of hydro therapy, John Eber, Helena Mahoney, high priestess; of Warm Springs
and many others.

Kramer loved and learned from them all. The most important lesson he learned was “there
are no clients, only family.” When you came through his door, he claimed you, your physical strength was developed, but also your worth.

Having gone this journey of discovery, he began full time practice in 1937. His greatest discovery, was the use of brush
technique to measure flexibility, and electrical stimulation to ease pain.

A tinkerer, he never received credit for most of his work But what made him different was his inner spirit. Thrown in jail, because the public thought physical therapy was faith
healing, he treated his captures, and told the tale a thousand times.

His skill was sought out, his clientele, became famous, New jersey Attorney General, Arthur sills, Mormon Prophet David Mac Kay,
the wife of singer Morton Downey, the father of future pop star John Bonjovi, who picked up his instrument out of boredom while waiting for his father.

But over seven decades, what mattered most was his belief that an individual relationship between therapist and client, was as if not more important than technology.

He refused to maintain distance, and denounced those who did. He had particular scorn for a dispassionate therapist. “If you don’t love, you can’t treat” was
his favorite saying.

As a result, he made people trust in themselves. He stood like a rock against
diet, and drug orientated treatments which didn’t develop the whole person.

When no one saw the potential in people, in both body and mind he did. I came to know him as a three year old, with cerebral palsy. He advised me on everything from exercise, to
developing my love of history.

He was one of the few outside my family, I trusted, as a result, I would listen to him, when no one else, could sooth my fear, or shape my efforts.

My friends, to truly unburden yourself is a gift. We as disabled so often must be something else, brave, stoic, calm.

Andrew Kramer, made it possible for all of us, to truly be. A Scoutmaster: Scouting and therapy were the two passions of his life. He once told me I should be buried in my Scout uniform, when I told him it didn’t fit, he barked, “Let it out in the back,
whose going to look at it?”

Serving for three years, and a state president of the New York Therapy Society, and Chairman for 12, he turned his back on that to work out of his home.

Younger voices, didn’t see the need, competent enough, they often refused to pour their inner selves as he had.

Plastic junk replaced, steel braces so lovingly designed. But the “Old Man” went
on. He knew in his heart that the disabled, were not merely equal, vital as that was, but people who had endured the impossible.

We have done that, dear friends and it’s time the world knew it.

His last great plan was a reunion of clients from all over the world. But it was not to be, he left this world, March 12, 2000.

Why have I told this story? Because I am sorrowed to see that so many of us, struggle to carve out a place in this world, and the rehab community, which should be encouraging us, fears intimacy.

The word “intimacy” has just come to mean sex, it is more my friends, far more. Men and women like Andrew Kramer, bled, and
cried and rejoiced, with those they worked with.

I think truly, we can carry on that legacy in our own lives, by reminding the world; that our journey, good and bad needs to be celebrated, not hidden.

Our focus, far more than on a physical cure, should be and is the expressing of life at all levels. We may not all be, Al Gilberts, but we can dance in our souls, to shout out to this jaded world, there lived a people
who gave joy and hope.

In the words of the late Wendy Wasserstein the greatest playwright of the second half of the last century; “Our task is to rise
and Continue”.

Please send your comments and questions to nathasha@audacitymagazine.com .

We can’t. I know. I am sure you thought I was going to sugar coat this experience so that you would pick up the want ads and jump at the chance to be a tax paying citizen. It’s not going to happen that way. I didn’t say it wouldn’t happen at all. It’s just not happening as easily as we see it in the movies when the person gets motivated to jump off the couch, go for an interview and land a great paying job.

But we have choices. We can stay home and lick our wounds, complain about the way society discriminates against us because we are not like them or we can count our blessings because we aren’t like them.

Reality is that we need to stand out. The problem is that we tend to stand out with our first impression. Sometimes, we don’t even get a chance to say hello before people think they have us figured out.

They think about all of the “reasonable accommodations” they will have to make for us. They think about the “sensitivity training” they will have to give to their employees so that they don’t gawk at us when we say “hi”. Yup, we talk!

So what can I say to you so that you will get up and get to work? The truth. That’s all I can give you. The reality is that more and more of us have to go out into the world. We need to walk around the neighborhood, shop at the local grocery store, and interact with the people in our community so that we become a “regular” person in their eyes. If they can see us as consumers and neighbors then soon we don’t become this novelty to look at on the streets.

How will that get you a job? Very simple. It won’t. But it will build a network of people who will see you in a different light; a better light. Are you a positive person when you interact with others? Do you moan about how terrible life is? Are you complaining about all the things you can not do? Be honest with yourself.

This isn’t just a disabled issue this is a human issue. Able, disabled, female, male, or whatever, our attitude sends messages so loud it could shatters windows faster than an OI bone fracturing in half!

This month take an inventory at yourself. Stop yourself when you hear “can’t” words come out of your mouth. I can’t walk but I don’t have to keep telling myself that. I already know it. However, I need to tell myself and those around me what I can do. Sooner or later they get the message and so will you.

Next month, find out if you are qualified to work anywhere for that matter.

Email us at nathasha@audacitymagazine.com and join the Online Forum to discuss employment issues with me and Audacity readers.

Christianity is a grand narrative, so is Marxism – great big concepts trying to provide a framework for everything. But people are not the same, a Christian in Afghanistan experiences life differently than a Christian in sunny California. These different experiences are little narratives, since everyone has a different background, country, family and mind.

Freedom is a grand narrative. It is a big word, inspiring and wonderful, but mostly, like all grand narrative, it is just an illusion. What does freedom mean anyway?

The luxury of being financially independent, owning a big sports car to take you to new places anytime you want? But then you lose your job, and the bank takes your fancy BMW. You were never really free then, were you?

Perhaps freedom is to vote for a political party without fear, to live in a democratic society with a free press and a fair judicial system. But leaders falter and ministers are corrupt, you lose faith in the government and you wonder where your country is headed.

I remember when I was nine years old, Nelson Mandela was set free and we all saw it on television. Apartheid was over, the people were finally free. But they are still poor; they are still dependant on a government they cannot trust, even though now it is a different government. People are complaining, they thought things were going to change.

Disabled people are not free. Unlike black and coloured people, even woman, we do not have a Nelson Mandela, a Martin Luther King Jnr or the Suffragettes to fight for our cause.

Ours is a prison far greater than Robben Island could ever have been, we are trapped inside the minds of people. We are not a race, we are not a gender, we are the grateful naïve, the poor souls unable to help themselves, we are those who are to be pitied. You cannot escape such a prison.

For me, freedom is a farce; you can only be as free as the ones around you allow you to be. The only freedom I have exists in my own mind; my thoughts are not governed by others.

Perhaps one day when the disabled appears in public like everyone else, when they occupy high-powered positions and do what they wish without question or ridicule, or sympathetic looks, I will change my opinion and my mind.

In reality, most people don’t want to be free anyway; they just want to be comfortable. Freedom is too much of a responsibility, people like a sense of order, and order means someone else is in charge.

I will live my life, and I will live it comfortably, one day the disabled will be free and the past will become just a bad memory.

Every year, many people make promises to themselves, vowing they’ll set a goal for the new year, and stick to it. As the new year goes by, some achieve their goals, others don’t. Even disabled people do this, including me. Sometimes I fail, sometimes I succeed.

How realistic are these resolutions? How practical and doable are they? Setting goals should be done within the person’s abilities, disabled or not. Achieving goals can be done efficiently and successfully if you have a plan of action and realistic goals.

The problem with many New Year’s resolutions is, the goals aren’t clearly thought out, and may be unrealistic, like losing 50 lbs in one month. It won’t work without causing serious harm.

There are many things we can aspire to do, which can be included in our daily routines. Goals help enrich our lives in ways we don’t often realize. Start out simple, and work your way up. It’s like anything else you don’t become a professional piano player overnight, do you? Practice is the key.

As disabled people, we’re told we can’t do very much, but those who say that are just shortsighted. I know many disabled singers, musicians, and others of various professions. Many are also activists, because we know we must speak up and stand up for our rights, even if we’re sitting down.

It’s no fun calling attention to our needs, and having to focus on them instead of our goals, but we can set goals that include these activities. No one knows what you need unless you tell them. They don’t know we exist unless we let them know we’re not a “silent minority.”

It doesn’t mean we have to be radical about it to make a point. In these times, it seems people aren’t willing to make the effort to make themselves heard, for fear of backlash. If we don’t stand up for our rights, they’re just going to keep stomping all over us. Resolve to be assertive in what you need and want.

We can resolve to help each other as well as ourselves. Disability can happen to anyone in any situation, due to accident or illness, from birth or after. My impairments happened before I was born. There are so many disabled people who have no one to talk to or help them. Why not resolve to find someone to be friends with? Remember our disabled vets, too.

When you decide to do something, it’s like an agreement which should be followed through to the end. It’s like taking an oath, something you will stick with, even in difficult times.

Any goal needs to be clearly defined, take it in steps. We start with that then figure out how we’ll work it out, step by step, like climbing a ladder, to see it through to completion. Even if you can’t walk, you know it’s done by taking one step at a time, right? This is how we begin, with the first step in creating our resolution.

Say, you want to buy something that costs more than what you can afford. You have to save a little each month, right? If you can spare a few dollars, set that aside in a special place, till you have enough. It may be a little difficult, but if you really want something, it’ll be worth it when you bring your new item home. I’ve bought things that took a year or two to pay off the debt for, but it felt very satisfying when I did.

Other goals could include breaking bad habits. Remember to replace it with a good one, to fill the void. Sometimes it takes awhile to succeed in this, but with a little encouragement and guidance, it’s possible to beat any bad habit. Often it helps to find someone else who has the same problem, and you can work together on it, which makes it easier and more enjoyable to work on.

How about some fun resolutions, like learning a new skill, discovering your family history, finding an old friend, mending bad feelings between you and someone you had trouble with; go out more, be more understanding, loosen up, smile, and laugh more.

I wish everyone a very happy, safe, healthy, and wonderful New Year, that brings goodness to every day of your lives.
Share your resolutions with Audacity. Email us at nathasha@audacitymagazine.com and you can also share them at the Online Forum where you can talk to other people who want to share theirs, too! ]]> http://www.audacitymagazine.com/2006/01/28/resolutions-for-life/feed/ 0 http://www.audacitymagazine.com/2005/12/16/uniqueies/ http://www.audacitymagazine.com/2005/12/16/uniqueies/#comments Fri, 16 Dec 2005 16:05:24 +0000 admin http://www.audacitymagazine.com/?p=585 The Uniqueies are among us. Uniqueies have special powers that supercede others that populate the planet, not from outer space or scary creatures. You barely notice as they blend with society. Most are aware of many of your failings and secrets, and know much that you think no one knows. While not a danger to society it is paramount that you be nice!!!

I am privileged to join Darlene, a Uniqueie for lunch. I observe what appears to be an argument ensuing at a table across the room, and I comment. Darlene says “It’s not an argument. They are excited over a new office policy. She’s the supervisor and is using all her feminine charm and flirting to gain his co-operation. The man is holding tightly to his briefcase as he has a diamond bracelet inside for his wife’s birthday. He’s had too much to drink but laughs telling her ‘I’m ok to drive.’”

I am in awe and tell her “I’m amazed you know so much about them or are you guessing?”

“No I’m 100% right, that’s what’s going on”, she says.

I exclaim “WOW, and we haven’t heard a word they’ve said.” Psychic? I don’t think so.

Another Uniqueie, Brian, stops at our table. He is such a fun, handsome guy with a big dog, Loekie. Right off he starts talking of the hostess here and says he knows she is attracted to him. “Yep, I like her too. Her clothes smell like Tide and Downey, but I like her smell, it excites me. I love the way she giggles and jiggles then says ‘Follow me to your table”.”

Darlene says “Don’t fool yourself. I think she likes your dog, Loekie.”

She knocks a glass off the table and Brian picks it up. While at the hostess stand a customer yells at her for moving too slow. Brian walks over. His massive statue is intimidating. He asks in his strong deep soft voice “Can I help?”

She picks up the scattered menus she had dropped and says “It’s ok. I’m taking them to their table.” He walks back to our table and fumes that someone could be angry with her trying so hard.

We order and I ask the server “Please cut my sandwich in four pieces, and put my tea over here.” She gives me a strange look but says “Ok.” Darlene moves to put her back to the wall. She prefers to see oncoming people.

Brian laughs and says “I like to practice knowing who’s sneaking up on me.”

I entertain them with a few one hand tricks I’ve learned. They think tricks are amazing. With their powers I think learning tricks for them would be easy.

A friend, Bill, quickly walks past our table and says hello. Brian says “I wonder what he’s up to? He’s messing with another woman and his late night drinking is still with him.” Bill passed so quickly I barely noticed what he was wearing.

Brian says “His suit fresh from the cleaners gives him an appearance of success but his private life is about to explode.”

“How can you say that?” I ask. “I haven’t heard of Bill having problems.”

Darlene agrees adding that his tie is wrong for his suit. “I guess his wife stopped dressing him.” I am dumbfounded by their assumptions. Feeling the need to say something I remark “I like his belt but his zipper could use another tug.”

I excuse myself to visit the gift shop. A lady walks by and I’m slapped with her kid’s feet, shopping bags and sweater on her arm. There is a quick “excuse me” as she moves on. A young man offers to reach the T shirts. I make my way back to the table, a young girl says “Let me help you through here, these scattered chairs are impossible to get through.”

Upon arriving at our table I find Brian and Darlene chocking with laughter. I’m told a lady walked by and passed gas. Darlene says “I think she bent over to quick, I saw her picking up something.” Brian says “I heard her earrings jingling then snap.”

Darlene while laughing says “We can’t be sure who but the odor is a definite.” I remark “No one else seems to notice.”

“Well it’s hanging here.” They replied with hilarious laughter.

Darlene divides the bill and takes my share from my zippered bag. Brian hands her $20 and says “Don’t forget to give me my $12.47 change.”

Brian owns a large successful stock brokerage firm. He is a genius with figures. A lunch tab and change are simple concepts.

Have you identified the Uniqueies? We are so much like the general population that you can be fooled. If you take the time to know us, we will share our awesome powers. Your private lives are rarely of interest to us. If you haven’t figured it out.

Darlene is deaf, she can read lips from across a room.

Brian is blind and has a heightened sense of smell and sound.

I’m left side paralyzed from stroke and ride a power chair. I have use of my right hand only. There are many Uniqueies that don’t speak well and you yell at them as if they’re also deaf, they hear and understand even your mumbling.

We have hormonal sensual feelings. Uniqueies are extremely sensitive to your impatience and irritation, the hostess with cerebral palsy learns to deal with you doing her best and doesn’t understand your anger. Some Uniqueies are slow to understand but often have a high IQ.

Knowing this, I think you will agree we are Unique. Our heightened sense of smell, sound, moods and the vantage point from a wheelchair allows us to know things that generally go unnoticed. We know things about you and many of your secrets. Perhaps you can make an effort to know us.

There are many gifts we can give and receive, during the holidays, as well as anytime, but the greatest gift is the one that comes from the heart. This is the one that’s given “just because you care.”

When I was very young, I was married to a blind man. He lost his sight from diabetes, and could hardly see when I met him. Although our religions were different, I celebrated Christmas with him. We were very poor, but had some very kind friends. We also had some very kind people in our lives, who we didn’t know, who donated some things to us to put under the small artificial tree.

I remember sitting by the tree, looking at these gifts from the strangers. It brought tears to my eyes, because I had rarely known such kindness. I could hardly believe there was anyone who’d be generous enough to give a present to someone they didn’t know. I don’t even remember what was in the packages, except for a basket of food.

The church that donated them was of another religion, but it didn’t seem to matter. The most important thing to us was that we were important to someone, despite our differences, and faiths. I vaguely recall someone visiting us with the packages, and how kind they were.

There have been other gifts given to me by strangers, too; furniture, clothes, and things for our son. Most were secondhand, but the thought and kindness meant more to me than how old they were. I took good care of everything, and passed them along to someone else when I was done with them. We had volunteers, as well as friends, come to help us with rides and assistance.

It doesn’t take a lot to show how much we care. We don’t need fancy wrappings, or a high price tag- the real value comes from somewhere else. As many have said, it’s the thought that counts. I have also given my time and whatever I could; to people I never met, as well as to those I knew.

The feeling I get from helping someone, is a warm, uplifting sensation that glows from the inside out. The greatest gift can come in many forms, from helping someone across the street, to just listening to someone’s troubles.

I also believe music is one of the greatest gifts anyone could ever give or receive. During my life, I’ve been given various instruments, recordings, and the opportunity to help someone write a song.

As we all know, things like laughter and love are wonderful medicines, and, guess what? They are also the greatest gifts of all! So, however you celebrate the season, I hope you’ll have an abundant supply of kindness, compassion, laughter, and love. It doesn’t cost anything to acquire, and, no matter how much you give away, you’ll always have more in reserve. A smile, a comforting word, a handmade card, is all among the simple things you can give, which will be treasured for a lifetime.

I wish all of you a wonderful, happy, safe, and healthy holiday season, that spreads joy and love throughout the year, and the rest of your lives.

Well, I think I’ll jump right on the “goals” bandwagon, if you don’t mind, with maybe a little talk of passion thrown in for good measure.

Befitting the very name of this here magazine, my goal for 2006 is, simply put, to be as audacious as possible.

According to the handy dictionary widget I have on my computer’s desktop, to be audacious is to be “willing to take surprisingly bold risks.”

Well, stand back world, because Amy’s coming through!

More to the point, I specifically intend to flex my audacity muscle in the area of my writing career. That is, I want a writing career. I strive to be a career writer.

To earn money for cleverly spilling my thoughts into creative, cohesive essays, articles and oh, to dream! Even writing novels, is something that I’ve desired for so very, very long.

Within the last year and a half or so, I have been able to scratch the surface of the writer’s market. I’ve been fortunate enough to get several of my articles published.

And thanks to the establishment of my blog Spina Bifida Moms, http://spinabifidamoms.blogspot.com this past April, my writing energies are now consistently jolted into high gear, prompting me to find even more outlets for getting my writings read by as many people as possible.

In fact, if I can touch on the subject of passions for a minute, I find that it’s a combination of both my immense love for writing and my boundless passion for my daughter that has truly pushed me forward with my writing.

I find so much satisfaction in writing pieces that specifically speak to other disabled parents struggling through child-rearing issues similar to what I myself face every day.

If it wasn’t for my already audacious acts of establishing my blog and shamelessly advertising said blog to any and every person, organization, magazine, and support group I could find whom I thought would be interested, then I wouldn’t have been offered the many exciting writing assignments I completed in 2005.

Who knows what surprisingly bold risks stand firmly ahead, ready for me to conquer in 2006?

I can’t wait to find out just how far I can stride in reaching my ultimate writing goals.

Here’s to the New Year, new goals, the pursuit of passions, and living a truly audacious life!

I find myself reaching out, hoping to break free of this crushing fist. I cannot feel myself move. I cannot feel myself at all.

Am I dead? Am I nothing but consciousness ensnared in some private hell? I cry out in protest, but my thoughts cannot form words with frozen lips. Where is the tunnel to ascension? Where are the Angels? Where is the God I’ve prayed to all my life? I am alone with my thoughts. I begin to wonder how long I’ve been here.

How do you measure time in timeless space? I tell myself to think without panic, taking a deep breath, but if I’m dead I have no breath. A small voice in my mind says to breathe anyway, so I do.

There now, that’s better.

Didn’t Descartes say, “I THINK therefore I AM”. I can’t be dead if I’m still thinking…right? In order to think one needs to have a brain to discharge electrical impulses, to formulate thought and reason.

Perhaps I’m just unconscious and haven’t awakened yet. Maybe this is all just a terrible dream or I’m in a coma and doctors are working feverishly to save me. Of course, that must be it! I don’t know much but I know I want to LIVE.

Yes, I’m sure my friends and family are all around me, praying for me, crying out to God to save me. I tell myself I can feel presence though I cannot see them. I create hope because I have to have some.

No, I do feel them! And there, in the distance, I see little points of light, stars breaking through, prayer that burns penetrating the darkness. They are offered to me, for me. Constellations form, galaxies of concern.

I am in a place where only love is real. The darkness, once so complete, is thinned to shades of gray. I am not alone. I am not forsaken.

A battle is being fought. Death refuses to loosen his grip but I will not go gently, without a fight. The Light is warm, dazzling, stirring a childhood memory. A verse I learned once in church floats to the surface of my mind.

I say the words:

“The Lord is my Shepard I shall not want…”

I feel myself being pulled across some abyss.

And far below, I can hear voices; “I’m sorry, Mrs. Smith, but your husband is brain dead. His spinal cord is severed. His body is being kept alive only by the respirator. I can see no hope for recovery. We know this is difficult, but have you considered organ donation?”

My wife weeping bitterly responded as she signed the document, “I love him so much and I know he would have wanted to help someone with a gift of life such as this.”

I listen stoically, resisting a very human impulse to scream, “I AM NOT BRAIN DEAD. I WANT TO LIVE.” But my spirit knows I must accept God’s will for me. I recall another scripture; “There is no greater love than to willingly lay down your life for another.”

“Let it be,” I pray. “Let it be.”

A brilliant light emanates from my body, instantly dissipating the darkness effortlessly. I am bathed in a storm of light, surrounded by beings that burn with love. Free from all I have been, I let them carry me toward an incandescent heart. The Angels have prepared a place for me in paradise.

I thought the advice was terrible. I wanted the best from others and I expected the best from myself. However, I noticed that her advice worked really well for her. She now has a boyfriend who has caused major rifts in her friendships with others so now she is lonely and stuck with him as her everything. But that is ok because she never had high expectations for her friends or her boyfriend.

She lives off the government because she doesn’t think society will accept her as a physically disabled woman in the workplace. But that is ok because she never had high expectations of society.

She pawns herself off to strangers for about $30-$40 and drinks herself into a stupor. But that is ok too since she doesn’t have high expectations for herself as well.

It appears that she has fulfilled her own prophesy. Her low expectations on her friends, boyfriend, society and herself have all been fulfilled. She is a lucky woman, right?

I don’t think I will ever be that lucky. I want only the best. I don’t understand why I should settle for any less.

This past summer I gave away my living room and dining room furniture. They were worn out and became an eyesore and a headache for me on a daily basis. Now I have an empty living room and dining room which I am piecing together little by little but only with the best that I can give. This is not about living beyond my means. This is about getting the best within my reach even if I have to extend myself a tad bit.

I made a list of the best things I want in the year 2006. Somehow, some way, I will get it. But as long as I keep the desire burning and the will to take passionate action I believe my wish list can become a reality.

Since I have 365 days to be 110% passionately honest with everyone I thought I should start out by stating that this list is full of materialistic items because it is easier to deal with the materialistic factors in life than the intimate and emotional ones. But that doesn’t mean I will not divulge information on that. Just not right now.

So here is my wish list:

1. A brand new Lexus, champagne color.
2. A three bedroom house with a huge yard and pool in South Florida.
3. A black or dark blue Fendi back pack.
4. A trip to Las Vegas.
5. A weekend in the mountains in a log cabin.
6. $10,000 shopping spree.
7. A guest spot on Law & Order shows
8. A collection of my favorite perfumes (The list is too long to type)
9. A personal fitness trainer.
10. A condo in NYC.
11. An interview with Oprah Winfrey.
12. A flat screen television
13. A flat screen computer screen
14. A personal chef
15. A 100 gallon aquarium
16. $1,000 shopping spree at a book store.
17. A living room and dining room set
18. A monthly appointment forever at an accessible spa.
19. A thin light weight video camera with digital camera.
20. A week in Hawaii

Have you made your list? It is never too late or too early to start.
It is your life, you set the standards and the rest will fall into place.