Friday, December 03, 2004

It’s Still Ticking (Prologue)

Re-Publish Note: I am re-posting this, the prologue of this series in order to keep it together with its subsequent parts. God knows this thing has taken long enough for me to write, hopefully this will allow those who wish to re-read it from the beginning some measure of continuity.

As I’ve mentioned ad nauseum, this has been the most difficult story I’ve ever written, not only from an emotional standpoint, but also from a details standpoint. It’s about scientific research that’s pretty dry, not to mention difficult to put into layman’s terms — it is to me anyway. Along with the tedious details are some big emotions that go hand-in-hand with this most personal part of my past, and possibly, my future. And as always, I don’t write in shorthand. It has to be as completely understandable as it is explanatory.

Therefore this story has been one colossal chore. The only thing I think I’ll ever really like about it will be the “finis” at the end.

I won’t say that I hope you enjoy it. More accurately, I hope you endure it. I’ll thank you in advance for that.

Maybe I should give out t-shirts…

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Okay I admit it.
I’ve been running. I’ve been hiding — not from you, not from myself, but from this story. I had really thought that the emotions pouring through me while on this fateful road trip with my younger brother two weeks ago would be begging to flow from my brain through my fingers as soon as I got back. And in all honesty, I got off to a good start. But then I hit a wall — one that I’ve still not cleared, but that I will attempt to slowly inch my way over as I trudge through this tale. I do this not because I want to, but because I feel I have to. This is the weirdest feeling I’ve had since I started writing; I just want to forget about everything, yet I want to write about it until my fingers fall off. It’s just that every time I’ve tried since my return, I’ve run into this wall, as if I was being diverted; led to another place. I feel as if I’m treading quicksand.

So why am I doing it? Because quite frankly, I’m afraid that if I don’t, I’ll never be able to write anything else ever again.

This is the story of my recent encounter with my most beloved little brother, who heretofore I have simply referred to as Lbro. I’ve never really liked that moniker, but have continued to use it because I’ve just never taken the time to come up with an appropriate alias. However I’ve decided that it’s much to flip; much too trivial a nickname for someone who was, is, and always will be so very special to me, especially at such a poignant time in his life as this is now. So after some thought I’ve decided that from this point forward, his name is Alex. We used to jokingly call him that years ago (mostly behind his back), due to the fact that his persona was so reminiscent of the character that Michael J. Fox made famous in the 80s sitcom, Family Ties. Fox’s character, Alex P. Keaton was a perfect reflection of the way my brother carried himself. He was smart, frenetic, funny, and just a bit condescending — in a somehow endearing kind of way, of course. That was the time in my life I will most fondly associate with the closeness I had with my brother, so “Alex” he is.

The cloud - Part One
Most of you reading this already have the Cliff Notes for this story. I have written at length about my family’s battle with Early-Onset Alzheimer’s disease (AD), which has visited three generations to which I’m closely connected, and countless others amongst the branches of my Mother’s family tree. For half of my life I wore the cloud of my potential mortality, hovering above my head. It would follow me around for 25 years. It was not always palpable, but it never went away. It was constantly with all of us from the day when my Dad explained to us the reality of the inherited disease that had befallen our Mother.

The cloud never blocked out the sun completely, but rather wispily shrouded my psyche from time to time; never enough to devastate, but just enough to provide that irritation in the back of my mind; that nagging headache of a thought, to rob me of my peace. Would it be me or one of my brothers to follow in the path of the family curse? In the late 1980s our fears would be realized as my second-eldest brother David began showing signs at the age of 38.

The cloud grew darker and more ominous.

But then in an almost unbelievable stroke of irony, David was asked to become involved in Alzheimer’s research being conducted at Indiana University Medical Center in Indianapolis, with which my entire family would later also become involved. By virtue of the study of my brother’s DNA, the researchers isolated the previously unknown genetic mutation, which triggers the form of familial AD that runs in my family. Finally a test was now available to determine whom, if any of the other family members carried the gene that would almost certainly foretell their later developing Alzheimer’s disease.

We all participated in the research study that would later garner international acclaim and proved to be a springboard for further research and diagnosis of other varieties of AD and other diseases, such as Huntington’s and certain types of Parkinson’s disease, which have a similar genetic profile. Our family was featured in medical journals and PBS science programs. We felt great about the future, and even better about being a part of something so potentially big; so potentially helpful to so many people.

Yet the reality for the here and now was still horribly uncertain. The research data was of course, blind. No names are ever attached to the results of such efforts, due to the legal liabilities involved. The University would be necessarily guarded about someone who might claim that the researchers, in diagnosing their fatal disease, have caused them irreparable emotional damage, resulting in crippling lawsuits against the institution.

So while we obviously wanted to know, we knew that when the results of the research were published that none of the individual findings would be plainly discernable.

Or would they?

When the study was published, much to our surprise the discussion of individual participants was surprisingly revealing as to their discernable identity. Sure it was written in scientific-ese, making it tantamount to translating the Dead Sea Scrolls to understand. But after a bit of a scare with regard to myself (more on that later), in our layman’s-eye-view, we all agreed that among our immediate family, the outlook was good.

Nevertheless, the only definitive way to find out whether or not any of us carried the AD gene, would be to first agree to sign a stack of release forms absolving IU of all legal responsibility for divulging such information to us. But there was more to it than simply signing a bunch of papers. There were long-term implications such as insurability, and future employability to be considered. Once a positive Early-Onset AD diagnosis is rendered, the one diagnosed becomes positively uninsurable and most likely unhireable to most employers in Corporate America from that point forward for the rest of their life. Those are just the cold, hard facts.

Therefore there were a few preparations to be made beforehand, such as the obtaining of costly long-term disability insurance. For me at that time, a freelance graphic designer having just moved my family to Nashville with limited financial resources, private disability insurance wasn’t even a remote option. I had to get myself established and take care of my family’s immediate needs. As much as I wanted to know, there was just no way I could afford it.

Although Alex wasn’t quite as hindered by the financial restraints, the process of learning whether or not he carried our grandfather’s AD gene was to be taken no less lightly. He was a successful young attorney at one of the nation’s most powerful and respected law firms, and I’m sure he knew his career would certainly be over if it ever came to light that he was carrying the AD gene. I cannot say what his mindset was at that time, but in discussing things with all of my brothers over the years, I know that we were all reticent to go get the “official word” on our genetic disposition. I think we believed that because of our assumed understanding of the study results, that we could take a pass. Who needs going to the trouble of getting the “final verdict” when the study has told us that we’re off the hook?

And the cloud? It just seemed to disappear. I rejoiced in the warmth of the sunshine on my shoulders. While we were indeed sad to have lost David, the rest of us all thought we were given a new lease on life.

Little did we know that Alex’s lease would eventually be revoked.

My little brother’s cloud has turned black. He is now showing signs of Alzheimer’s disease at only 44 years of age. He is most likely in his second year of onset. If the average duration for my family holds, he has about five more years to live, but only about two or three with any viable lucidity. However there now are drug treatments available that may successfully slow down the process of the disease and hopefully, will help to extend those lucid years a little longer.

This has come as such a shock that everyone was in denial, attributing Alex’s rapid succession of failed jobs (three law firms in two years) to everything from sleep apnea to clinical depression. No one thought it could possibly be AD.

But it is.

How could we have been so wrong? Who goofed? Were we misled?

Nobody lied to us — I’m convinced of that — we just didn’t ask the right questions, because we had misconstrued the results of the research to have already given us the answers. I had read over — but not actually read the study probably a half dozen times before tonight. But only now have I finally discovered where we erred in our understanding of it.

It takes a licking...
Chances are unless you’re around my age you’re more familiar with Patrick Swayze than John Cameron Swayze. However I’d be willing to bet that the latter Swayze’s contribution to pop culture is better known.

John was a popular 1930s-era radio news reporter who went on to gain even more notoriety as one of the true pioneers in the fledgling medium of television. During WWII his voice gained fame over the airwaves for NBC Radio. Then in 1949 Swayze became one of the first TV News anchormen for NBC, giving way to Huntley and Brinkley in 1956.

His notoriety naturally led to his demand in the 1950s and 60s as a commercial pitchman. Although he did commercials for many different products over the years, he will certainly be best remembered for one in particular; even more for the product’s slogan which he immortalized.

For over 20 years Swayze appeared in commercials for Timex wristwatches, and became one of the most recognized personalities on television. The famous slogan he delivered at the end of each commercial, “It takes a licking and keeps on ticking, ” has become firmly entrenched in American pop culture. Today we casually, even comedically apply the now common phrase to anything that is well-made or irrepressible.

Apparently Timex watches aren’t the only things that offer such resilience. The family time bomb doesn’t seem to want to quit either.

It’s still ticking.

Next: Why the hell didn’t anyone bother to read the fine print?
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