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Ben Stevens: Presentation to the Callier Center for Brain Research at the University of Texas, Dallas

First I would like to recognize the Callier Center for Brain Health here at the University of Texas Southwestern Medical School and all the professional staff, the student interns, the Pfizer Corporation and all the wonderful people who are making these services possible.

I feel somewhat like the brand new theological seminary graduate who was preparing his first sermon as an associate preacher. He decided that it would be a great idea if he went to the senior minister for some special advice. He told the senior pastor that he wanted to consult with him about his first sermon. He asked, "Just how many points should there be in a good sermon?"

Without a moments hesitation his seasoned colleague replied, "At least one!"

I certainly hope that I may achieve that minimal objective without being too much of an over achiever.

Without doubt I wish to identify the great works and services that have already been provided by the Callier Center for Brain Health. Such things as the construction of our own life stories, the instruction of the nature of this disease, the training in self-care and self-reliance, the training and counseling of our care-partners and many, many other things that you have so liberally provided. For those of you who do not know me, I have made quite an issue of the words "care-givers" which I see as too one sided and have insisted on using the term "care-partner" instead.

Strange as it may seem, there are some advantages to having this malady. For example, "Honey I sorry I forgot to do the dishes, it's this disease you know"; or grammar does not have to be precise, "I can't remember nothing no how" or I can freely repeat myself. Since some people's expectations are already set low it doesn't't take much to exceed expectations!

I have been asked to address what other additional services and offerings could be offered. I have three brief suggestions:

My first suggestion is the creation of an Alzheimer's Café. The idea here is for a physical place where people who are afflicted, their care-partners, and professionals can gather to meet one another, exchange experiences, ideas and intermingle in an totally integrated environment and perhaps have a special speaker for the evening. This would be something that could start quite modestly by meeting once a month at a mutually agreed on location such as a restaurant. Over time it could readily grow to have a regular meeting place. Perhaps we could develop neighborhood branches. The possibilities and variations are very great.

Second a newsletter, database or directory of people who would like to share their experiences and resources with one another. This would be a forum where we could express our compliments, concerns, or alerts for services for Alzheimer's afflicted persons, their care-partners and professionals and pass on information to those who were not able to be at the meetings. It would be a media whereby we could further know one another and help each other. It could be a vehicle for keeping up with the latest research development and could include items of pending legislation.

Third, advocate continued emphasis on self-reliance for as long as possible. The benefits of self-care are really is what this program is all about. We do not wish to be in a "give-me mode" all the time. We wish to be recognized for the abilities that we are capable and not for those that we are incapable.

Now, finally for those of us who have this disease, I have some shocking bad news: We are not the center of the universe! That was a real shocker to me when I discovered that the polar rotation of the earth didn't shift at least 15 degrees the day I was diagnosed! Other people still went to work, airplanes still flew, and traffic jams still continued. What's happening here? Don't they know? Doesn't the world understand? Ben Stevens has Alzheimer's!

We have an obligation to ourselves and to others to show that we are more than our disease. We must not let his disease define who we are! Likewise we must not let the disease be our life. Realize that there is a world outside of us.

Discuss openly and freely to all those who would ask of us, but remember there are other matters in this world. We can discuss world events, sports, entertainment, our children, our precious well-behaved grandchildren, or we can talk about other people's spoiled and temperamental grand-brats!

We must also realize that we as victims have a special knowledge that very few researchers, analysts, psychiatrists, neurologists, psychologists, physicians, husbands, wives, brothers, sisters, or whoever, can possibly have without having the disease it self. Certainly they can recognize all the symptoms, they can study all the PET scans, all the MRIs, all the EEGs and interpret the batteries of tests that we take. But only we, who have this disease, know what it is like to actually have this disease! Others may have concerns, others may have sympathy, and they may even have empathy for us, but only us with this sickness can know first hand what it is like.

Now are you ready for this? I DO NOT WANT THEM TO FIND OUT! Now what does that mean? Since others do not and they cannot really and truly know first hand; it is our job, our responsibility to be tolerant of their inability to cross over to this side. I must be the one to make the adjustments. However mistaken other's judgments may be, it is up to me not to be offended, not to become angry and to accept their limitations, just as we expect them toaccept ours. At some point this may be removed from my abilities, but while I have control I do not want to be remembered for any emotional outburst, any despair or sorrows.

Now to go back to the story of the apprentice preacher, I'm not certain that I have made so much as a single point in this address, but if you heard me speak before, you know that I like to include stories in my presentations. And it just happens that I have one.

A story is told about just before the American Revolutionary War that Paul Revere, who as you know was a silversmith by trade, made a small statuette of an owl that was about six inches tall and made of sterling silver. Hethen gave this sterling silver owl to a friend who was a general in the revolutionary army. Unfortunately this sterling silver owl made by Paul Revere was lost when the general's house was burned to the ground and never seen since. It is estimated that if this statuette could be found today that its value would be in excess of a half millions dollars.

Why then should this statuette have such a high value? Let me suggest to you that there are at least three reasons:

First is who made it.
Second is because of what it is made of.
Third is because there is none other like it in the whole world.

Now take an imaginary trip with me over to the city of Canton in East Texas. You may know that this is where they hold the "First Monday Trade Days". It is billed as the world's largest flea market. I don't know if this is true or not, but those of you who have been there know that it is huge. Now imagine you are browsing through this huge flea market when a six inch blackened statue of what appears to be an owl is on the back shelf. You pick it up to examine it. You are surprised by its weight; it didn't look so heavy. It is heavily tarnished. The inscription on the base says "P.Revere". And the price tag says fifteen dollars.

Why such so low a price? As you may have guessed already there are three reasons.

First the seller didn't know who made it.
Second the seller didn't know what it was made of.
Third the seller did not know that it was one of a kind.

Many of us go through life with a very low price tag because:

First we don't acknowledge who made us. But we are made by no less than the Creator of the universe.
Second we are made of God stuff, the material that God spoke into being.
Third we are one of a kind. There is not another one just like you in the entire world.

Therefore even though we may be tarnished and we may not be recognizable, we still have great value, great worth.

Thank you.