A Credo For Support

A Credo For Support

Do Not see my disability as the problem, recognize that my disability is an attribute.

Do Not see my disability as a deficit. It is you who see me as deviant and helpless.

Do not try to fix me because I am not broken.

Support me. I can make my contribution to the community in my own way.

Be a person who listens and does not take my struggle away from me by trying to make it all better.

Do Not use theories and strategies on me.

Be with me.

And when we struggle with each other, let that give rise to self-reflection.

Do Not try to control me. I have a right to my power as a person.

What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.

Do Not teach me to be obedient, submissive, and polite.

Do Not see me as your client.

I am your fellow citizen. See me as your neighbor.

Remember, none of us can be self-sufficient.

Do Not try to modify my behavior.

Be still and listen.

What you define as inappropriate may be my attempt to communicate with you in the only way I can.

Do Not try to change me, you have no right.

Help me learn what I want to know.

Do Not hide your uncertainty behind "professional" distance.

I need to feel entitled to say NO if I am to protect myself.

Do Not be charitable towards me.

Be my ally against those who exploit me for their own gratification.

Do Not try to be my friend. I deserve more than that.Get to know me. We may become friends.

Do Not help me, even if it does make you feel good.

Ask if I need your help. Let me show you how you can best assist me.

Do Not admire me. A desire to live a full life does not warrant adoration.

Respect me, for respect presumes equity.

Do Not tell, correct, and lead. Listen, Support, and Follow.

Do Not work on me. Work with me.

Written by Norman Kunc and Emma Van der Klift

Life is Often Surreal

Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference. -- Virginia Satir

It's not often that I'm able to live my life from a surreal distance - something akin to watching it on a movie screen - but last weeks 3-night hospitalization proved to be just that. Surreal.

Dialysis seemed to go okay but practically immediately when Stacy arrived home she started vomiting
every 10 minutes. Made a phone call to the doctor. "What's her BP? Give her Promethazine and once her stomach settles down give her an additional BP med. and then about an hour later let me know how her
BP is." Yeah, right! Keeping a pill works really well when one is vomiting every 10 minutes . . .

Three hours later at 7:30 we were waiting to be seen in the ER. At 10pm lab tests were finally being run and I knew that it was time to send Mom home before she feel off of the stool. At 11pm it was decided that Stacy's BP, vomiting and migraine needed more attention so plans were made to stay overnight. At 1am we finally rolled into a room, the largest one I'd ever seen in the hospital, and I kept asking where my cot was. Talk about being a pest, but I'd spent most of the day in bed with vertigo and other dumb symptoms and was beyond being able to cope.

After a snack of crackers and peanut butter I fell into a deep sleep and was shocked to wake up at 5:30 in a cot in the hospital. Mom arrived at 9am and sent me home for some much needed sleep. Stacy was moved out of the fabulous suite like room into a broom-closet size room set up for dialysis. Wouldn't you think that dialysis patients required a large room?

Three nights in the hospital, new BP meds that finally lowered Stacy's BP and we were back home. It seemed more like a dream than another blip in the road.

I Love Paris!

Place des Vosges , 1997 - a favorite photo that was manipulated to create how I felt about scene I watched while sitting on a bench. Impressionistic.

I was very happy when the phone rang at 10pm last night and my youngest daughter said, "we're home." I don't like it when they're out of the country. It's more comforting to now that they are only seven hours away. They had a great time at the resort they stayed at in the Caribbean and Jack, three-and-half-years-old, had a good time as well. The ocean was so green and clear that they now realize just how polluted the Pacific Ocean has become. Sad!

The new Sleep Formula I started taking two nights ago is doing too good of a job. I not only sleep through the entire night but half of the morning as well! I came out of a inane dream at about 11:00, had coffee, read the Sunday paper, made brunch and the next thing I knew it was 2:30! This won't do! I think I'll try taking less of the formula. At this rate I'll never get anything done.

From the Sunday Herald - Happy Talk:
Most people are as happy as they make up their minds to be. Abraham Lincoln
Some cause happiness where they go; others whenever they go. Oscar Wilde
Whomever is happy will make others happy, too. Anne Frank
When one door of happiness closes, another opens; but we look so long at the closed door that we do not see the one which has been opened for us. Helen Keller.
A sure way to lose happiness, I found, is to want it at the expense of everything else. Bette Davis.

Texture - play

I wish I could get out from under the brain fog and flu-like symptoms that have taken up residence! I feel awful! I'm positive that the stress of the last few months has caused this latest flare-up of the immune dysfunction junk that I've dealt with my entire life, but that doesn't alleviate the problem! There are so many things that I want to do but the focus for the past two weeks has been on how to once again convince my immune system to behave itself. I'm not fond of being on a quest searching through data for things that "might" provide some relief from joint and muscle pain, brain fog, migraines, vertigo and flu-like symptoms. I'd rather be on a creative quest that includes a working knowledge of design elements. That to me is much more productive, but if I don't attend to the physical stuff I will never be able to accomplish anything I've set out to do. I've been putting off taking care of my health issues hoping that by ignoring them they would go away. Experience should have taught me that ignoring the health issues will only make them worse when I finally face the fact that I'm nearly too ill to get out of bed.

So, once again I'm re-thinking the supplements I take by the handful! And for the second time in six months I'm going through a detox to rid my system of toxins and other creepy things that seem to be running through my system. Extracting unwanted visitors does marvelous things to an already unhappy system and unfortunately one of the things it does is to make the ability to concentrate fly out the window. Every thought I have disappears before I even put it down and very little of what I read makes any sense. It's taken me two hours to write these few paragraphs today! And they probably don't make much sense . . . If I had the energy I'd be hysterical, but I'm running on empty or what I refer to as "energy deficit."

Almost French

Paris - 1997 is my attempt at making an antique looking postcard. This was the view outside of our hotel room on my first trip to Paris. I loved waking up during the night to see the Eiffel Tower lit up it in all its splendor. The one thing I didn't like seeing in the daylight, however, were antennaes and satellite dishes on the rooftops! Back in '97 I had no idea that in a few years I would be able to manipulate photographs in such a way as to eliminate wires, cars, people and satellite dishes! If only I had known!

For the past few weeks I've been slowly savoring a book, "Almost French" by Sarah Turnbull. In between the mystery reading marathon I've been on (one book a day) I read a couple of chapters in Turnbull's book and go to sleep dreaming about Paris. Reading this book is almost as good as a decadent dessert. I've walked many of the streets she talks about and can visualize places that she describes and I know that I will be slightly depressed when I've reached the end of the book.

Life being what it has been for the past five years I doubt that I will do much traveling in the future. Sometimes that bothers me and other times I know that I will carry the memories of traveling to Europe with me for the rest of my life. Thanks heavens for books like "Almost French" that help me to relive the experiences and adventures that I had in '97 and 2000.