Friday, August 14, 2009

It's been awhile since I could post to this blog...mainly because I have been on vacation with my family. I went through the normal 3-5 day frustration of adjusting to a new living space (really hard luck...a condo on the beach in Fenwick Island, Delaware!) and am now ensconced in a wonderful ocean-side rental. I feel like I should be one of the many amazing novelists in the romance genre, but, alas, I am only a mediocre writer at best, with an unusual, (to most), problem—I have the ALZ…the dreaded Alzheimer’s disease.

At this point I am out of the closet, so to say. But when I was first diagnosed I was very protective of my status as an ALZ person. I wanted to limit disclosure to my best friends. I wanted to have first right of refusal to reveal my condition. I found that most people are sympathetic, and after a small flurry of gossip, you immediately get, “well I certainly haven’t noticed anything, you seem fine to me…”

Normally, by the time you get around to being ready to disclose yourself, everyone has heard some version of the reality already anyway.

It is extremely difficult to control access to information…(in other words, rumors travel fast, and the truth is normally found out way before any “official” disclosure.)

With “early onset” you are in a nether world. You get the wonderful, comforting experience of knowing how you will probably decline and die. So this is a benefit, right? You can plan. You can savor the joy of living, giving yourself that extra impetus to do those things you always wanted to do. Of course, many of these experiences that you are wanting to have some day, cost money. And if you can believe it, most of the time your plans and those of the economy, do not intersect very nicely at all. And if your luck has run sour, and you have already experienced some very inconvenient twists and turns in this most unpredictable economy of the 2009 variety, that is, an economy of scarcity, recession, and emotional turmoil, then you might not be so sanguine about theses turns of events.

But let’s be optimistic for a moment. Let’s say that this economic factor lessens and things go back to being “normal” for a moment. But hey, with the ALZ, there is no normal. We live on the edge, mark the little hesitations and mnemonic slips, and experience that life of uncertainty.

So we need a creed, a “12 steps”, a motto, a code, a syntax, a “coming out, a set of principles.” What is it only we of the “Sign of the ALZ” can do? What is the source of our power in our identity?

How will you know us?

ALZ Identity:

For starters, the current symbol of the ALZ association is truly weird and creepily dated in my estimation. It’s not the first thing on the list, perhaps, but it’s certainly within the top 5 needs. Something more hopeful, a mark that is not so abstract, not so dull, something that a younger person might not immediately shy away from, perhaps a palette that uses more primary colors…purple is pretty maudlin at times, and to borrow a phrase, “we are not a glum lot.”

So how could this identity evolve?

How will other ALZ folk be able to recognize you?

How will other ALZ be able to help one another?

Online chat, etc. could be extremely valuable for ALZ folk, except that the difficulties of dealing with remote technologies—email, chat, etc., can be more than daunting for those unfamiliar or afraid to try “new” technology. Face to face moderated group interaction is clearly the most direct approach, but the problem of incidence of the disease puts a real strain on any sort of effectiveness.

In the Alcoholics Anonymous world, we have what is known in the program as a sponsor. This person is an Alcoholic, and he or she volunteers to help another person by being a reliable, somewhat experienced resource—a person who is able to communicate and share in the emotional and cognitive difficulties of at least early stage Alz.

In my experience, talking with and supporting other people in the same general condition as another Alz can produce good results, and the ability to gain perspective through empathy with other human beings going through the process of acceptance and learning new ways to function builds confidence, acceptance, and “right-sizing” of this extremely difficult condition.

What will you expect us to do? (WORKS)

Who will help us? (ALLIES)

With whom will we compete?

In what manner (if any) will we relate to spirituality?)

Why should anyone care about this relatively low incidence malady?

We, the keepers and destroyers of ALZ, hereby set forth these guiding principles for the benefit of all humankind:

Age is no barrier to ALZ

ALZ is no barrier to intelligence, wisdom, activism, education, persuasion, intellect or quality of life:

Given the facts of the disease and its progressive nature, however, ALZ folk currently live under grave threats of memory loss, impaired judgment, and the certainty of “loss of self.”

We who are diagnosed, can be a significant tool in the ongoing fight against this disease:

· Through financial contribution

· Through disclosing yourselves to others and to the public

· Through being willing to speak when asked

· Through the support of lobbying efforts

· Through donations of time and treasure, and ultimately, through your deceased body

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