Wednesday, September 15, 2010

That Damned, Unnerving Uncertainty of It All
— A Miniseries (Part 1 of 4)

NOTE: I’m all about full disclosure, and if the title of this miniseries hasn’t at least given you a clue, I’ll just go ahead and say it: this is not a happy story, and I make no apologies for that.

This is a tribute to two people (…or is it three?); one you know — if you’re a friend of this blog — and another you might know — if you’re an enthusiast of Southern California sports media. What you don’t know, is that the principals are related — in more ways than one.

That being said, it has taken me just over three weeks to ponder, research and write this story, and now that I’m finished, not only am I drained, emotionally, I’m sorta asking myself why I did it, because it really isn’t anything other than bad news. However bad news still needs to be told, and sometimes, even bares positive fruit.

So go pop a Zoloft, put away the sharp instruments, and pardon my melancholy as you learn a little more about a couple of outstanding and complicated people.

Rude Awakening
Ever the electronic packrat, I have genuine difficulty in erasing personal emails. I have nearly every meaningful one I’ve either sent or received since about 1999 — and probably many more than that stored within even earlier system backups. They’re holed up somewhere in some old backup program’s format that I likely no longer have the software for, on ancient DAT tapes that will probably never again be restored.

However I just can’t bear to toss those old tapes, y’know? I keep thinking, “maybe someday…”

Emails are like electronic time capsules; some providing more valuable information than others, but for me, even the most mundane trivia of my past is something I can lose myself in for hours.

The problem is that I don’t spend nearly the time I should, sorting through and determining what deserves to be kept and what should have never made it to my inbox in the first place.

Three weeks ago this past Sunday, however, I was engaged in the semi-regular activity of weeding through some of those old emails; judiciously purging the inevitable junk mail and other useless noise that I’d unintentionally saved over the years.

In the course of that process, I came across an exchange of emails I’d had with my sister in-law, Seraph, back in late April 2007, some five months prior to my most recent — and likely, my final — visit to Dallas to see my brother Alex.

The email made me smile; but it was a smile wrapped in sadness. It returned to mind a bittersweet moment in both the life of my brother as well as that of a friend of his, who was actually the subject of that communication.

Following up on that discovery of a few Sundays ago, I was curious to find out about the current status of Alex’s friend, so I investigated further to hopefully gain some kind of idea of that person’s current standing, as it occurred to me that I hadn’t read or heard anything about them in quite awhile.

There was a good reason that I hadn’t, but it wasn’t because no one else was talking about it.

Stop me if you’ve read this already…
It’s been quite awhile since I’ve written anything about my brother, whom If you’re unaware, is in the final stages of the insidious strain of Early Onset Alzheimer’s disease that has plagued my family for more than two generations (probably a lot more).

Although several maternal-side family members (including my grandfather, aunt, uncle, and mother) succumbed to the disease, we didn’t know a lot about the nature of how it was passed on until 1992, when my family took part in extensive genetic testing at the Indiana University School of Medicine’s Alzheimer Disease Center, in an effort to find a means to test for it.

Heretofore there had never been any reliable way to even detect Alzheimer’s prior to physical onset, which in the case of our family’s “pre-senile” variety, usually becomes manifest during the victim’s late 30s-to-early-40s. Even then, the disease generally takes a couple of years more to present itself to the point that the victim or family members become aware that something is truly wrong.

Fortunately, identification of the causal genetic mutation responsible for our particular brand of AD came to light a year later, based in large part upon the comparative research of our family’s genetic material, including that of my second-eldest brother, David, who was in mid-to-late onset at the time but would become my immediate family's second victim just two years hence.

The results of the research were published in a 1993 Lancet medical journal article. My family reveled in the joy that we had helped accomplish something that would not only serve our progeny, but that of generations to come, both within and outside of our family.

However, that joy was later all but totally mitigated when we discovered that we’d misinterpreted the test results, which had seemed to indicate (unofficially) that we were all in the clear, but in fact had thrown out several family members by necessity of the rules of blind clinical trial method; a fact that we hadn’t noticed, but which simple arithmetic would have been revealed, had we’d been paying attention.

Sadder still was the reality that one of the two family members who fell between the cracks was Alex, who began showing signs that no one acknowledged — the least of whom being himself — back in the early 2000s. By the time we allowed ourselves to consider that Alzheimer’s could be the cause of Alex’s rapidly-decreasing ability to function normally, it was already too late. He was positively diagnosed in November 2004, a year or more beyond the disease’s initial onset.

Although the introduction of recent Alzheimer's drugs Aracept and Namenda have slowed the progress of the disease’s advance and in have fact likely added at least two years to Alex’s lifespan, they have only postponed the inevitable.

[It’s a subject that one glance at my tag cloud (in the left sidebar) will tell you I’ve written a lot about, so I’ll dispense with any more re-hashing and refer you here, here, and here if you’re interested in learning the lion’s share of background info regarding the family curse.]

Though four years my junior, Alex was someone I revered like an elder brother. He was my lifelong best friend. Although I helped raise him as a child, there was never anything but total acceptance as equals between us once we became adults. We married the same year, spent time together both alone and with our families, and never hesitated to constantly affirm to one another how much they were loved.

Alex was my chief confidante; we trusted each other with personal details that will never reach the ears of another living soul. Knowing that I have now lost that outlet has been more than sad for me, so much more than a simple loss, but infinitely less than that which has been experienced and will forever be felt by the wife and three children he’ll leave behind.

Alex is now in hospice care and has been for several months. It is a general rule that hospice enters when the patient has a year or less to live, and so that would indeed indicate that the end is near for my beloved little brother.

He is truly a shell of his former self; unable to speak, feed, clothe, or bathe himself. He still lives at home, as he has from the beginning, a triumph of determination that my sister in-law set forth from the outset; that her husband would not die in a nursing home or other undignified facility as did all in my family who preceded him in this supremely unceremonious terminus of life. Her circumstances have been immeasurably trying and she deserves so much more credit than could ever be given her.

However my intent wasn’t to make this entry a premature obituary for my brother, but to also acknowledge my sadness over the other sobering news that I learned that late August Sunday afternoon.

Next: A Long, Long Times Ago...
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