FEELINGS OF DISABLED PERSONS

UNDERSTANDING CYCLIC VOMITING SYNDROME
(IN ORDER TO REAFFIRM LOVE & TO BE SUPPORTIVE OF SUFFERER!)

My daughter has Cyclic Vomiting Syndrome. It is rare and very mis-diagnosed. It is characterized by debilitating, 24-48 hour (average) episodes of explosive vomiting; nausea that doesn't abate after vomiting; profound lethargy (inability to walk or talk, because the nausea is so all-consuming that it takes all of the sufferer's concentration to deal with it); emesis happens about every 5-10 minutes for hours;

CVS affects 1 in 50 school aged children; it also affects adults and causes untold upheaval in normal life at home and in the workplace; creates the need for intensive medical intervention; causes the school-aged child to miss an average of 24 days of school per year; can go 12-15 years undiagnosed or misdiagnosed; the average yearly cost of medical management is $14,000; it has a severe impact on family life, as it consumes everyone's attention and energy during an episode and afterwards.

Since it's so rare, many people tend to think it's a mental illness and could be controlled by positive thinking, or that the sufferer could "talk themselves out of an episode" if they really wanted to. It is a metabolic disease, and it happens to many kids who have good parents and stable home lives.

Some of the friends still are of the opinion that this is something that could be prevented with an attitude change. It's true that many CVS sufferers are very emotionally sensitive individuals who "wear their heart on their sleeve", but there have been times when my daughter has gotten sick and we were able to stop the emesis without a hospital or ER visit..."normal" stomach upset and vomiting, from emotional distress, flu, food poisoning, etc. is NOT the same as a CVS episode. As with all debilitating conditions and diseases, education is the key...people need to reserve judgment until they know all the facts.

And then they need to be supportive and reaffirm their love for both the sufferer and their family, because no matter how often an episode happens, it never becomes easier to deal with...in fact it becomes harder with time, because you know what's coming and you know it's going to be very unpleasant.

Barbara Biggs
bjb@eoni.com
4/99


LOVING BROTHERS WHO ACT IN IGNORANCE

One of the hardest things to deal with over decades of illness was the attitudes of some of my brothers and sisters. They thought I was exaggerating, a whining neurotic. I know they meant well and only acted in ignorance ... These are good people that truly love Jehovah and try their best to serve him. But it nearly destroyed me. Nothing I have been through, even the fires and deaths, have been harder to bear. There are just no words to tell you what it's like after so many years of struggling and feeling so alone to see things like Bro. Burt's health letter and your new site. Thank you, oh, thank you!!!!!!!!!!!!!! I am sitting here crying with gratitude as I write. Email: "Susan" at: despite.disabilities@sysnetsolutions.net
1/99


Having Lost the Things Dearest to their Hearts...

I have a great deal of contact with those that are discouraged due to illness. It is so tragic when the friends are SO ZEALOUS AND YET SO SICK. They become so discouraged so quickly because they have lost the things dearest to their hearts, like PIONEERING, MEETINGS AND BEING WITH THE FRIENDS that are their only family and friends. They need to know they are still loved by the friends and most of all by Jehovah.

Many feel they must be spiritually sick if they can no longer serve as they once did. IT IS NOT TRUE! Their little bits, struggling with pain mean far more than those who pioneer with ease! Satan's favorite tool is discouragement. There is a place in God's family for all of us, even with the illnesses some have to bear. Never give up if you are ill and please those of you who are well, please try and understand and visit. You can get so very lonely if the friends do not remember you.

Sher Charboneau (Florida, USA) 12/98


"She Looks Just Fine to Me!"

My wife is disabled and I can understand what many are feeling. One thing I have noticed and which troubles my wife greatly are those people who have the attitude "she/he looks just fine to me, they don't look sick." This sometimes occurs with our own brothers and sisters.

With disabilities like asthma, fibromyalgia, (my wife's disease) diabetes, lupus and crohns disease, THESE ARE NOT APPARENT TO THE CASUAL OBSERVER, and thus many label those with these ailments as not really sick. Sorry to ramble. That is why this web site can help all of us to see our family with love and compassion.

Ralph Mysel. (Oklahoma, USA) 12/98


Depression & Low Self-Esteem

"...for years, I have struggled with an inferiority complex, and at times my level of self-respect has sunk to absolute zero..."

S.G. Germany, Mar.8 , 1988 Awake!


Disabled...Do Not Always Have to be Helped to be Happy

"I really appreciate the most encouraging article (Awake! Oct. 22, l988) for a handicapped person to be happy, he does not always have to be helped. I had MY RIGHT ARM AMPUTATED. My every movement was watched so as to help me at the dinner table. I was served, had my bread cut and my fruit peeled, and even my cheese was prepared for me.
"Of course, this was out of kindness, but deep down inside I ended up having bad feelings towards those having my interests at heart. And in the end, I didn't even say thank you.
"When I am alone, surprisingly enough I am QUITE HAPPY DOING EVERYTHING ON MY OWN."

C.C. France, Awake! Jan. 22, 1989


Ask First, "May I help?"

" Ask FIRST, 'May I help or is there anything I can do to help?' Do not presume that a disabled person wants your assistance. He may not."

Awake! Aug. 22, 1990


Instead of Saying "Let me do it for you"....

"For a handicapped person to be successful, it is important that family members and others cooperate in the right manner. That does not always mean to assist. It may mean to REFRAIN FROM ASSISTING. Telling a handicapped person...'OF COURSE YOU CAN!' and letting him try, is often of greater help and encouragement...than saying, 'Let me do it for you!' "

Awake! Oct. 22, 1988


Stuttering & Ridicule!

Expressing appreciation for the Society's articles on stuttering, J.M.S. writes "...I suffer discrimination by persons who ease and ridicule those who stutter...At last I have a magazine that takes the problem seriously!"

J.M.S. Brazil


Deaf Need Understanding

Most people are ignorant of the problems of the deaf. Above all, [the deaf] need understanding from hearing people and respect for their individual qualities WHICH ARE UNIMPAIRED except in the imagination of others."

Jack Ashley, British member of Parliament (who is deaf, 1989)


Deaf Are Not Mentally Impaired

...Yet one bright young woman who cannot hear says that some people seem to view her as MENTALLY RETARDED!"

Awake! Aug. 22, 1989


Helping by Learning the Sign Language

"When those that hear and speak make the effort to learn sign language: In this way deaf and hearing people become more integrated...This is the first step to breaking down barriers for al those in the deaf world."

J.G. Kyle & B. Woll, researchers


Views of the Deaf from Birth

Deaf from birth do not view themselves as handicapped. The difference between them and hearing people is viewed as merely a language difference and a cultural difference."

Awake! Aug. 22, 1989, pa.8


Views of Those Becoming Deaf Later in Life

These persons "often experience a much different psychological impact...a deep sense of loss...For many of these sign language is a difficult remedy since it requires learning an entirely different language."

Awake! Aug. 22, 1989, pa.8.


Understanding the Blind

"Some feel ill at ease with the blind, so while most may want to help when a blind person is waiting to cross the street, not all stop and do so. Why? Often because of uncertainty about the blind person's reaction to the offered assistance The blind, however, generally welcome help when it is offered in a NATURAL POLITE WAY even as help might be offered to someone...in carrying a heavy load."

Awake! Aug. 22, 1989, pa. 4


Many Blind and Deaf Become Lonely

"People who are blind and deaf lack companionship. How can this vital need be fulfilled? Sometimes pets can help....GUIDE DOGS open up a whole new world for the blind giving freedom and independence and companionship.

"A counterpart to dogs for the blind are HEARING EAR DOGS for the deaf."

Awake! Aug. 22, 1989, pa. 7


One Handicapped Person Cannot be Compared with Another

"Ludwig van Beethoven composed some of his greatest masterpieces while TOTALLY DEAF.
Franklin D. Roosevelt was president of the U.S. in 1933-1945, although severely handicapped by POLIO.
Helen Keller, BLIND & DEAF & MUTE from early childhood became a prolific author and educator.

"...it must be remembered that every handicapped person cannot be compared with another. Interests in life differ. Inate abilities differ. And mental inclination also plays a large part."

Awake! Oct. 22, 1988


The Most Difficult Time for Disabled Persons

"The time IMMEDIATELY AFTER a disabling accident or illness is likely to be the worst for the stricken one and those near him. The initial shock is often followed by FEELINGS OF DESPAIR & HOPELESSNESS...encouragement seems like an assault...

"A mixture of mourning, anger, self-pity, and despair may seize a handicapped person completely during that time..."

Awake! Oct. 22, 1988


Handicapped as to Ability to MOVE not as to Ability to THINK!

"This was a comment of Ann-Marie, a severely handicapped Swedish woman who uses a wheel chair:
"This is why I want to use that ability [thinking ability] to make the best of my situation on my own."

Awake! Oct. 22, 1988


What Hurts Some Handicapped Most of All

"What hurts me most of all" explains Jimmy, "is when able-bodied persons treat me as it I were somewhat MENTALLY RETARDED! Sorry to say, some people talk and act as if they think that every person in a WHEEL CHAIR is mentally retarded!"

Awake! Oct. 22, 1988


Disabled Want Others to View them Like Anyone Else!

"Disabled persons want the same consideration and understanding that would be accorded a person with no physical disability...'I appreciate it when people view me LIKE ANYONE ELSE' says Ed. 'Look at ME. Don't look at the wheelchair'. Then he related an experience that he and his wife had at a restaurant:

" 'The waitress took my wife's order first and then asked HER instead of ME, what I wanted. I AM NOT DEAF! I JUST CAN'T WALK!' "

Awake! Aug. 22, 1990


The Greatest Compliment to a Disabled Person

"Bill advises, 'The greatest compliment to a disabled person IS TO TREAT HIM AS NORMAL, to relate to him as you would ANYBODY ELSE.'

"...the more we get to know these as INDIVIDUALS the less we think about their DISABILITY"

Awake! Oct. 22, 1990