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STORIES & POETRY



Robert Annand - 02:03am Sep 5, 2000 EST

Being A Comfort In The Face Of A Tragedy.


In all, you honestly mean well and truly want to be an encouragement and comfort to others. Therefore, because you genuinely care, you desire to come up with the answers to fix the problem; and, because you cannot bear to see your loved one suffer, you desperately want to believe it is not so bad. Yet, if you were at a funeral, you would not tell the widow, oh come on, hell be fine tomorrow. Instead, you acknowledge his death and show her compassion for her loss. Or, if your friend broke their leg, you would not say, hey, you just need to get a positive attitude, your leg is not really broken! Hopefully by reading this booklet, you have learned that your natural instincts of denial, in order to protect both you and your loved one, must be developed into loving acknowledgement. After all, no one can battle an enemy when they refuse to believe they exist! Therefore, remember, it is absolutely impossible for you to be compassionate, until you have acknowledged there is a situation to be compassionate about! In other words, how can you say, I am sorry you are so ill, if you are always saying, I do not believe you are so ill? Yes, accepting what is happening to your loved one means having to deal with all of its pain, mourning and changes, but do not sell yourself short! After all, if they are forced to live with it, you can certainly choose to live next to it! In addition, please remember that your loved one would never choose to willingly give up activities they used to enjoy! In fact, people stricken with debilitating illness would do just about anything to get their lives back! Therefore, you can rest assured, knowing they will keep fighting, researching and pursuing ways to regain their lives or at least prevent further progression of the disease. Once you express your acknowledgement of their losses, belief in their word and desire to understand, you will see a huge change in their attitude toward both you and the illness! They will gratefully receive your declaration of concern, embrace your compassion and gain strength from your faith in them. Assuredly, with you standing by their side and not confrontingly before them, they will rise like a flower in the sun, reaching for the sky!

Truly Love Me, By First Believing In Me!
Copyright 1996, Revised 1999
This Pamphlet Is Part 3 Of IDAs 40 Page Booklet!

About The Author:

Sherri L. Connell (IDA), studied music Theatre for 4 years in college where she was very active in singing and dancing. She obtained a Bachelors Degree in Human Resource Management and a Bachelors degree in Christian Leadership with a minor in Liberal Arts. However, despite plans of a promising career in Human Resource Management and a Christian Music ministry, just before beginning her Masters Degree she became very ill and unable to fulfill her lifelong dreams.

Although she suffers from Multiple Sclerosis, Lyme Disease, spinal injuries and various other complications due to these illnesses, she does not look disabled. As a result, she has been made aware of the need to educate others about the devastation of living with an invisible disability, as well as the pain and frustration that develops from being trapped inside a body that will no longer cooperate with a persons aspirations or even simple daily chores.

Sherris goal is not to create a sense of pity, but compassion for their losses, respect for their courage and belief that their limitations are very real and beyond their control. Thus, in order to develop a better understanding and loving support, Sherri has dedicated her experiences and trials to informing others about the needs and hurdles of living with a chronic, debilitating illness.

Sherri has a wonderful website Called The Invisible Disabilities Advocate

Here is the link that will take you to her site. http://www.invisibledisabilities.com/>The Invisible Disabilities Advocate

Sherri has written informative pamphlets and a 40 page booklet, "Helpful Hints," that can be handed out to friends, family, church members, support groups and even store employees, in order to educate others about debilitating disease. Please go to her site to find how to order Sherri's booklet and phamplets




Ten Commandments

The following was found in Ann Lander’s Column. It was written by a lady shortly after she was diagnosed with Multiple Sclerosis.

My Ten Commandments

1. I shall not worry, for worry is the most unproductive of all human activities.

2. I shall not be fearful, for most of the things we fear never come to pass.

3. I shall not cross bridges before you get to them for no one yet has succeeded to accomplishing this.

4. I shall face each problem as it comes. You can handle only one at a time anyway.

5. I shall not take problems to bed with me for they make very poor bedfellows.

6. I shall not borrow other people’s problems. They can take better care of them than I can.

7. I shall not try to relive yesterday for good or ill--it is gone. I will concentrate on what is happening in my life now.

8. I shall count my blessings, never overlooking the small ones, for a lot of blessings add up to one big one.

9. I shall be a good listener, for only when you listen do you hear ideas different from your own. It’s hard to learn something new when you are talking.

10. I shall not be bogged down by frustration and self-pity.




Me & My Imagination (M.E. & My Imagination)
by Kit Murdoch

Just imagine, if you will.
Settle down and sit quite still,
And I will tell you, true and free,
Just what it's like to have M.E.*


You have the 'flu, your toenails hurt,
Your tail is dragging in the dirt,
You're hot and cold, your mind is dull,
Your brain is pounding at your skull.


If you try to read a book
It's blurry every way you look.
And when you want to watch TV,
Or concentrate on what you see


your mind is foggy, dull and slow,
Your brain won't start, it doesn't know.
You need a word, you cannot think.
You think your thunker's on the blink.


It hurts to move, it hurts to sit,
Breathing even hurts a bit.
You ache in spots you didn't know.
It's always there, it will not go.


You haven't slept in seven years.
Draw the curtains, cry your tears.
It wasn't meant to be this way!
It isn't fair, you're not okay!


Does this seem a bit too tough?
Your imagination's had enough?
Well you may stop - but I endure.
For me, you see, there is no cure.


I cannot work, I never dash.
Any stress can cause a crash.
Fifty symptoms stand in wait
To pounce on me at any date.


At any instant symptoms change.
It's disconcerting, always strange.
You can't predict what each day brings
You cannot plan ahead for things.


I've tried the pills and swallowed potions,
Burned my incense, rubbed on lotions,
Tried the snake oils, turned my bed,
I stuck ten magnets on my head!


What have I learnt from years of this?
Do not wait for things you've missed -
Find a passion, small and slow,
And gradually, watch it grow.


Find your joy in solitude,
Embrace the quiet interlude.
Treasure friends who understand,
Those who love you won't demand


a single thing you cannot do
Friends like these are ever true.
And do not strive to fight what's real
Just find a place to BE, and HEAL.


Don't give up, and don't despair
A healing place is always there.
And though my flesh is surely weak,
My spirit and my heart will speak


to you of hope, and times of laughter
Today, tomorrow, ever after.
This is what it's like for me
Each day of living with M.E.



M.E. stands for Myalgic Encephalopathy, also known as Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS)and Chronic Fatigue Syndrome (CFS).
Kit lives in Australia with her partner Jon. Kit has had ME and FMS (Fibromyalgia Syndrome) since August 1994. Through her experience of living with this disability, she has discovered a new and gentler life which is full of love, laughter and friendship.





RECIPE for A FIBROHUGS COCKTAIL

Ingredients:

1 Heart full of love and compassion
1 Mind full of good advise
1 Mouth full of comforting words
Several teardrops
2 Ears that listen
2 Eyes that see

Preparation:

Using the 2 eyes and 2 ears, observe and hear the needs of a friend.
Mix in love and compassion. Shed some of the tears. Using the comforting word, spread the advise. Heat the recipient in the warmth of your arms with (((((((((((HUGS)))))))))) for as long as it takes them to heal.

Yield: a new friend for life.
From the FIBROHUGS kitchen!!!!!!




I Want To Be Six Again

To Whom It May Concern:

I hereby officially tender my resignation as an adult!

I have decided I would like to accept the responsibilities of a 6 year old again. I want to go to McDonald's and think that it's a four-star restaurant. I want to sail sticks across a fresh mud puddle and make ripples with rocks.

I want to think M&Ms are better than money, because you can eat them. I want to play kick ball during recess and paint with watercolours in art. I want to lie under a big Oak tree and run a lemonade stand with my friends on a hot summers' day.

I want to return to a time when life was simple....when all you knew were colours, addition tables and simple nursery rhymes, but that didn't bother you, because you didn't know what you isn't know an you isn't care. When all you knew was to be happy because you didn't know all the things that should make you worried and upset.

I want to think that the world is fair. That everyone in it is honest and good. I want to believe that anything is possible.

Somewhere in my youth...I matured and I learned too much. I learned of nuclear weapons, war, prejudice, starvation and abused children. I learned of lies, unhappy marriages, suffering, illness, pain and death. I learned of a world where men left their families to go and fight for our country, and returned only to end up living on the streets, begging for their next meal.

I learned of a world where children knew how to kill, and did! What happened to the time when we thought that everyone would live forever, because we didn't grasp the concept of death? When we thought the worst thing in the world was if someone took the jump rope from you or picked you last for kick ball? I want to be oblivious to the complexity of life and be overly excited by little things once again. I want to return to the days when reading was fun and music was clean; when television was used to report the news or for family entertainment and not to promote sex, violence and deceit.

I remember being naive and thinking that everyone was happy because I was. I would walk on the beach and only think of the sand between my toes and the prettiest seashell I could find. I would spend my afternoons climbing trees and riding my bike. I didn't worry about time, bills or where I was going to fin the money to fix my car. I used to wonder what I was going to do or be when I grew up, not worry about what I'll o if this doesn't work out.

I want to live simple again.

I don't want my day to consist of computer crashes, mountains of paperwork, depressing news, how to survive more days in the month than there is money in the bank, doctor bills, gossip, illness and loss of loved ones.

I want to believe in the power of smiles, hugs, a kind work, truth, justice, peace, dreams, the imagination, mankind, and making angels in the snow.

I want to be 6 again

(Author Unknown)





Angela's Word

When Angela was very young, age two or three or so
Her mother and her father taught her never to say no
They taught her that she must agree with everything they said
And if she didn't, she was spanked and sent upstairs to bed


So Angela grew up to be a most agreeable child
She was never angry, and she was never wild
She always shared, she always cared, she never picked a fight
And no matter what her parents said, she thought that they were right


Angela the Angel did very well in school
And, as you might imagine, she followed every rule
Her teachers said she was so well-bred, so quiet and so good
But how Angela felt inside, they never understood


Angela had lots of friends who liked her for her smile
They knew she was the kind of gal who'd go the extra mile
And even when she had a cold, and really needed rest
When someone asked her if she'd help she always answered "Yes"


When Angela was thirty-three, she was a lawyer's wife
She had a home and family, and a nice suburban life
She had a little girl of four and a little boy of nine
And if someone asked her how she felt she always answered, "Fine"


But on cold night near Christmas time when her family was in bed
She lay awake as awful thoughts went spinning through her head
She didn't know why, and she didn't know how, but she wanted her life to end
So she begged whoever put her here to take her back again.


And then she heard, from deep inside, a voice that was soft and low
It only said a single word, and the word it said was "NO"
From that moment on Angela knew exactly what she had to do
Her life depended on that word, so this is what her loved ones heard:


NO, I just don't want to; NO, I just don't agree
NO that's yours to handle; NO that's wrong for me
No I wanted something else; NO, that hurt a lot!
NO, I'm tired and NO, I'm, busy, and NO I'd rather not!


Well her family found it shocking; her friends reacted with surprise
But Angela was different-you could see it in her eyes
For they've held no meek submission since that night three years ago
When Angela the Angel got permission to say NO


Today Angela's a person first, then a mother and a wife
She knows where she begins and ends, she has a separate life
She has talents and ambitions, she has feelings, needs and goals
She has money in the bank and an opinion at the polls


And to her boy and girl she says: "It's nice when we agree;
But if you can't say NO, you'll never grow to be all you're meant to be
Because sometimes I know I'm wrong, and because I love you so
You'll always be my angels, even when you tell me NO.


By Barbara K. Bassett
(as published in "Chicken Soup for Woman's Soul)


Won't You Put Your Hand In Mine

Won't you put your hand in mine?
Won't you step inside?
There's no need to be afraid,
The doors are open wide.

Won't you sit down on a chair?
Here, sit by my side,
I know your legs are trembling,
And recent tears you've dried.

We all know what you're going through,
We truly understand,
On trembling legs we all came here,
And someone held our hand.

Please don't feel uncomfortable,
There's no need for that here,
Your pounding heart will settle down,
And your vision soon will clear.

Would you like a cup of tea?
I'll get it, I don't mind.
You just sit there and relax,
And loosen, try to unwind.

We want so much to help you,
To try an ease your pain,
We know how you are suffering
, For we all felt the same.

We all know what a battle it is,
To get through just one day.
To dread to rise each morning,
And get started on our way.

At one time we were all alone,
With our anguish and our fears,
But since we've walked into this room,
We've found someone who cares.

So, won't you put your hand in mine?
Won't you step inside?
There's no need to be afraid,
Our hearts are open wide.


By Eileen Power-1987--Eileen is from Newfoundland, Canada and has suffered from panic disorder and agoraphobia for 24 years. Several years ago she found that putting her feelings and thoughts on paper was therapeutic. This poem is taken by permission from her website. Do yourself a favour and visit her website. It is very beautiful and extremely professionally done.

Eileen's Website




How To Kill A Sick Friend Part 1
by Sue Klaus

Sometimes having a sick friend is such a drag. They always need something.

Sometimes they're weepy, and they complain all the time. But there are ways to get rid of this nuisance once and for all. The object is to "dump the whiner." So, just follow these helpful steps:

Never, ever call them. And don't return their calls. Even if they are still occasionally calling you, they're so sick that they will lose their momentum and eventually stop. After all, even if they listen to your problems, you certainly don't want to hear theirs.

Be harsh with them; say mean and spiteful things, especially when they seem vulnerable. Remember, even if they were there for you in the past, the idea is to get rid of them now. The sick and afraid are particularly sensitive to cruelty, and the more you use, the better.

Write them out of your life - don't tell them about social events, especially parties you are holding. And if they actually try to have one themselves, don't show up, and don't RSVP. That way they'll be wondering if you are coming right up to the very last of the party.

Never invite them to join you for lunch, or a concert or a show. That would only make them think you cared.

Never call just to say hi and see how they're doing. And never ask them if they need anything at the store when you go.

These techniques will definitely kill them, one way or another. They will definitely kill the friendship; and even if they don't kill physically, psychological, emotional or spiritual murder also counts. If they had the nerve to go and get sick, it's not your problem.

Remember, some sick people have some hope that anyone cares. These are the toughest, so you must remember to stick with it. Don't let them wear you down and whatever you do, don't break down and care. You'll never get rid of them that way.
-----------------------------------------

How Not to Kill a Sick Friend

The previous section, is, of course, not what really happens. Very few people actually plot out moves to kill sick friends and family. Unfortunately, the end results of thoughts and actions are the same. It is important to realize where these thoughts and actions come from, in order to change the end results.

There are differences between disabilities that originate at birth and disabilities that happen later. Both cause tremendous problems with our image of that sick or disabled person.

There is great grief when a child is born with physical and/or mental impairment. Even before a child is born, family and even friends have a predetermined image of what the child will look like what life will be like with the child what they will be like even what they will like to do, or how they will earn a living.


When the dream child doesn't arrive, it seems like instead of the person they expected, a stranger has invaded the house. It is not surprising that the rate of divorce among families with disabled children is higher than the national average.

When the illness or accident occurs later, there is not only the grief of family or friends, but now the particular disabled person has their own grief to sustain as well. They have lost so much, it hurts just to talk about it, because it overwhelms them and anyone who will listen.

Grief and loss accompany chronic illness and disability, but unless you're affected, you may not realize the impact. Let's take a look at what can be lost in chronic illness and disability: Self-concept,Freedom,Confidence, Dependability & Reliability,Energy,Fitness,Driving,Activity,Fun,, Friendships,Family support,Sports,Hobbies,Dancing,Travel,Work,Money, Health Insurance,

There are also additions to life that are not welcome: Assistive devices,Doctor bills,Pills,Medical system run-around,Hospitalizations, Conflicts with employers,The Social Security Disability System,Family doubt, grief, fear.

Any of these alone would be definitely uncomfortable - combine them and you have a very bleak picture - without friends to stand by you.

The process of rebuilding after such a big change is a decades-long task. It is a series of two steps forward, three back that gradually, over years of time can improve. But it is easier, faster, and more rewarding when you can share even the smallest victory with a friend.


The "F" Word - Fear

This is the main reason why you will not act on your impulse to remain a friend. Because of the changes that have occurred, you are confused and feel helpless in the situation. You don't know what to say, what to do - so you say or do nothing. It is less work to let a friendship die than to keep it alive.

But you're a busy person - you have responsibilities. Where can you find time for someone who seems to need so much? If there was any time to spend with them before they were disabled, then you have to decide to make time again - if you are a friend.

But hospitals give you the creeps. That's too bad. Let me tell you who's got a worse case of the creeps - the patient! If you think they like it there, think again. Hospitals are not designed for anyone to feel comfortable. Suck it up and go visit.

The "F" word and your response:

"I don't want to hurt their feelings."

This is a common concern, and in some ways it can be hard to avoid. You can try to walk in someone else's shoes, but in truth unless you could actually trade bodies for a week, you will never have an idea what that person's life is like. The trick, I guess, is to learn how to think before you speak. Most adults have to learn to do this at work, in their families. If you think it might hurt someone - don't say it. It's hard to do - but like everything else in life, practice makes perfect.

"What do I say to someone who is hurting?"

Would you feel less pressure if you didn't have to say anything at all? Then relax, because sometimes the less you say the better. It is more often your actions that will speak for you. And the action of listening instead of persisting in idle chatter can mean so much more to someone that still needs that shoulder of yours, even if it's getting a little soggy. What does it cost to give a hug? What is the price of holding someone's hand for a few minutes? What is the financial expenditure of a mild neck rub, or an arm to lean on as they walk? Once you find that the human cost of not doing these things is much more expensive, you will be ready to be a friend.

"What shouldn't I say?"

This question has many answers, and many have come from disabled people I know. These may not be hard and fast rules, and may need to be adjusted for the situation, but they end up being universal.

"You look great! Or, You're looking much better!"

This implies that you expect them to feel great, when that may not be the case. Many illnesses and disabilities are invisible, and belie the underlying pain and suffering accompanying them. Instead ASK how they feel, and really listen. Take your cue for further comments about their appearance from their answers.

"At least you're not in a wheelchair."

What you don't hear is the rest of that statement. In response to that comment, the disabled person may think "not yet, anyway - and then I can count on you to say something else hurtful to me."

"At least you can still (hear, see, walk)." Or, the classic: "You should count your blessings."

If you have not experienced the loss, don't assume it's easy to discount one. If you have, you are still too bitter to help anyone yet.

"You shouldn't have tried to work two jobs."

Is it really your call to blame a sick person for their illness? No. Blame is the most worthless concept on the planet. It accomplishes nothing, except to hurt the target. This applies in all areas of life - there is no reason for blame except to hurt someone. Try to remember who hurts most when you blame yourself for anything. And how the situation remains amazingly the same.

"You just haven't found the right doctor."

And you can't understand what chronic illness/disability means. Some illnesses make a person sick for many years without killing them. Pain, trouble walking and working accompany this person every single day of their lives, and there is no end in sight. If anything, there have been too many doctors with too many conflicting answers. The probability of a cure is not an issue - the necessity of living with illness is the only acceptable option. Your acceptance of their reality impinges on the disabled person's acceptance of life with illness/disability.

Even when you try, things don't always work out ....
What if they say no, they can't do whatever?
Let's say you asked them to lunch, or for coffee. The person says they are not up to it now. Think about making a contact possible - on their terms. What if you brought over some treat, stayed for a short time, and gave a rain check for an outing for a week later? Maybe they are not able to "entertain" and they feel pressure to entertain people that come over. Can you think of a way to visit and be the entertainment so they don't need to? Can you stop by with some food that can be warmed up later for their dinner, not stay long, and then call them later in the week?

What if they say yes and cancel at the last minute?

This is common with chronic illnesses that ebb and flow, like Multiple Sclerosis, Lupus, and Chronic Fatigue Syndrome, for example. The person really wanted to go, gets psyched up for it, and when the day comes there is physically no way they can go. They feel bad for disappointing you, and they are disappointed in themselves. They can't control their bodies, and that is frightening.

Can you save the day?

Are you flexible enough to translate their unpredictable health into your talent for spontaneity? Rent a movie and bring it to them. Order a pizza, or pick up sandwiches, and make it a small mini-party. After all, who is going to miss you more - the Eagles or your friend?

‘They have a phone, too - why don't they call me?

There is a difference in the dynamic when you call from when they call. When you call, you always have something to offer, if only your companionship, a kind word, an errand. When a sick person calls, it is an imposition on your time, and no one wants to impose. They don't want to be a bother, and if they have already had friends disappear into the woodwork, they'll stop calling anyone just in case they feel they pushed others away with "being needy." You need to make the call, and keep making the call.

What can I do for anyone?

Next time you head out to the grocery, try calling your pal and asking if they need a few things, then get them. When you bring them by, no big deal, no dramatics. You may slowly becoming an angel on earth, but you don't have to tell anyone that.

Remember: Make the call ,Keep calling ,Keep asking ,Keep contact ,Don't give up ,Don't give up ,Don't give up !
-------------------------
Part 2 About the Author & Comments from the Author ... Sue Klaus, M.A


.
I am a trained audiologist who worked with the hearing impaired for 11 years, while slowly being affected with the chronic illness called Chronic Fatigue Syndrome. More than 15 years after the illness started, I would like to help people keep friendships alive even after life-changing events. I have been on both sides of this dynamic, and have some insights to offer.
Some Friendly Advice Dateline: 10/28/98

"The hardest thing is not to be able to work magic for a friend." - Maya Patel

This week's feature is written especially for those who have friends or other loved ones coping with CFS and Fibromyalgia. Chronic illness presents a variety of challenges to relationships at a time when they are needed the most. Most people with CFS/CFIDS and Fibromyalgia feel an ongoing need to talk about their illness and its impact on their lives. At the same time, many people become more distant or reclusive; this is especially true during periods of severe symptoms, because being around others requires energy that is in such short supply. These alternating needs for distance and closeness can be difficult and confusing.

In addition, a person with Chronic Fatigue Syndrome (or PWC) has experienced enormous losses due to illness. CFIDS often affects every aspect of a person's life, causing a decrease in self-esteem. Once strong and self-confident people may feel inadequate and unlovable due to lack of productivity, inability to work or engage in other activities, discouragement about recovery, coping with debilitating pain and fatigue on a long-term basis, and so much more. Yet the PWC is not the only one who is suffering.

Watching a friend or loved one struggle with an incurable and poorly understood illness often makes people feel powerless and discouraged. But your friendship does matter, now more than ever; and there are many things you can do:

Educate yourself about CFS/CFIDS. Read articles about personal experiences and coping.

Be patient and caring. Reassure your friend of your love and support.

Acknowledge the seriousness of the illness. Validate feelings of loss, sadness, anger, and hope.

Offer to help in practical and specific ways; such as grocery shopping, managing finances, running errands, or household chores.

Attend doctor's appointments with your friend. Show interest in their medical care and be there to provide moral support.

Most PWCs both love and hate hearing "you look good." It's okay to say it, but understand that looking good doesn't necessarily mean your loved one feels good!

Spend time together, enjoying activities that can be modified if necessary.

Make plans flexible to accommodate unpredictable symptoms and fluctuating energy levels. Be understanding when they must be changed or canceled at the last minute.

Be wary about giving advice. Don't attempt to "fix" the PWC or provide a solution.

Realize that your loved one may seem "okay" while you're together but then pay an enormous price later for the over-exertion.

Ask questions about things you don't understand.

Enjoy low-energy activities together; such as watching movies, sitting outdoors, and eating meals together.

Express gratitude for what the PWC still gives to you, even though they may not be able to do some of the things they could before.

Reassure them about how important they are in your life.

When you are not sure about how to be helpful, just ask.

Be aware of unpredictable mood swings. Try not to take reactions personally that might seem illogical or over-emotional.

Talk about the changes in the PWC and in your relationship together.

Listen while your friend expresses needs, emotions, and thoughts.

Express your admiration for your loved one's strength in coping with illness so far.

Learn to be perceptive. You don't have to be a mind-reader, but you can watch for signs of how your loved one is feeling, or when they may need extra help and support.

Stay in touch and extend invitations, even when the PWC may not be able to accept.