Friday, February 04, 2011


I love my wife, and I know she loves me. We love each other despite the respective compulsive behaviors we continually embrace that drive each other a little crazy sometimes.

For example, I acknowledge that I suffer from Dishwasher Palsy; that affliction in which a person’s hands cease to function beyond the act of setting dirty dishes in the sink (as opposed to continuing on that extra foot-and-a-half to place them in the dishwasher).

On the other hand, Michelle suffers from a malady that seems to run rampant in her workplace, called Office Email Forwarditis, in which she seems helpless to resist the urge to forward every chain email she receives to at least a dozen other people and then, in turn, to me as well.

These electronic missives of folly generally fall into a narrow range of categories. Many are somewhat offensively political in nature. Others are simply goofy larks involving some Baby Boomer’s waxed nostalgia for ‘the good old days’. And we've all seen those embarrassingly juvenile collections of silly images, featuring various snide and/or corny captions, usually screaming at you in 36-point Comic Sans or Brush Script (IN ALL CAPS, OF COURSE).

As a graphic designer, these emails often give me the urge to jump off a cliff. As a rational, thinking person, I sometimes have my doubts as to whether or not the originator employed those same capabilities at the time they were dreaming these things up.

Nonetheless, I never delete them out of hand. I always at least give glance to each email, because every once in awhile Michelle will surprise me with a winner; a chain email with a difference; one with a sentiment that rings true, regardless of its level of trite sappiness; a message whose aim to remind us how precious our time on this planet truly is and how we need to make every minute count; one that is right on target.

The email she sent me on Wednesday was like that. I really needed it too, as I had received news the day before that truly placed the whole concept of ‘life’ into perspective for me once again.

Another Episode of ‘Life Interrupted’
This past Tuesday, my morning oatmeal was soured by a Facebook message from my cousin Jeante, announcing that yet another victim had been claimed by our family’s curse of Early-Onset Alzheimer’s Disease (EOAD). Another of my maternal cousins has followed her mother and elder sister into heaven years earlier than she ever should have. She was 54; the same age as me. And even though we hadn’t spoken nor even occupied the same room since we were kids, this courageous woman was extremely special to me, via the familial and experiential bonds we shared on numerous levels.

Cheryl,’ as I’ve referred to her here in my blog, had battled the disease through active participation in AD research for the better part of the past 20 years. She was a pioneer, an invaluable asset in the field of Alzheimer's research.

Over the last quarter of her life, she had been in a unique and harrowing position of awareness, knowing of the death sentence that had been imposed upon her from birth. At age 35 she became aware that she carried the familial gene that has inflicted the horrible reality of EOAD upon generations of my maternal family tree. However in response, she didn’t retract in fear; she didn’t shut down but rather, became activated, and for the next 15 years, courageously volunteered in the research efforts of the Indiana University School of Medicine’s Alzheimer's Disease Center, as well as in clinical trials of various other institutions in her local area.

She had learned the devastating truth of her condition just prior to the round of tests involving my entire extended family back in 1992, where, under the auspices of IU’s Dr. Martin Farlow, a precursory test for the disease had recently been discovered.

Her decision to become an ongoing participant in the institution’s research involved at least two cross-country trips per year from her home in Oregon to Indianapolis. And while the experimental drugs she helped test likely lengthened her lifespan, in the end, they only postponed the inevitable.

Nonetheless, she considered it a worthy effort; and so it was, as the clinical trials in which Cheryl participated were among those involved in the eventual development of the now-commonly prescribed AD drugs, Aracept and Nemenda. These drugs serve to slow down the onset of Alzheimer’s Disease, and in cases of the longer-developing, non-hereditary, so-called ‘sporadic’ variety (most common in elderly populations), can indeed extend a victim’s mental viability a great number of years.

Unfortunately, the aggressive variety of EOAD that has plagued my family isn't nearly so inclined to be denied for very long. Cheryl’s onset was largely delayed into her late 40s, which is several years removed from the average typical beginning of onset in our family’s experience (usually between the ages of 39-41).

And to be sure, by comparison Cheryl would have no doubt been taken from us years earlier if not for the drugs that she helped to be developed. That her own onset symptoms were delayed for so long is no doubt a tribute to the drugs’ success.

At age 54, she lived at least 5-6 years beyond the established pattern of those in our family who had previously succumbed to EOAD.

Although she knew that she carried the gene indicating she would develop Alzheimer’s since 1991, Cheryl wasn’t positively diagnosed until 1999. I didn’t hear anything about her condition until about five years later, when she would have been around the age of 48 — the same age my mother and one of our uncles were when they died. Her elder sister Denise had passed at age 49, however Cheryl remained well-functioning for several more years.

Albeit only over the phone and via email, I finally got to meet Cheryl’s husband Mike a few years ago. He revealed to me that it was in 2005, after she’d gotten lost driving to the office of her longtime physician that they knew her disability was entering the final stages.

Another Long Goodbye
Cheryl was bright and vivacious; I’ve been told she could charm the spots off a leopard. She was a successful businesswoman, working as a manager and buyer for a major department store chain for more than 23 years. But most of all, her husband loved her. Mike, like many other spouses of AD sufferers, has gone through hell and back to be there for his best friend.

Upon realizing that her onset had progressed to the point that her faculties were deteriorating rapidly, Mike, still in his mid-forties, took early retirement from his career as a successful printing company executive to spend as much time as possible with Cheryl while they still had time to enjoy life together.

He purchased a touring motorcycle and the two of them set off for adventure, traveling the United States from Portland to New York City; from Arizona to Alaska; soaking in every moment, feeling every emotion, and bonding as never before. These were the fleeting memories that Cheryl carried with her unto the end; until her thoughts became a morass of brief glimpses and confusion.

Mike began fund-raising efforts in Cheryl’s name through Alzheimer’s Memory Walk events in his local community, consistently being one of the top money-raisers to benefit The Alzheimer’s Association.

If I had a vote to nominate anyone for sainthood, there’s no doubt in my mind who’d get the first nod. I can honestly say I’ve never seen greater love so obviously expressed by a husband for his wife than that of Mike for Cheryl.

Following the couple’s travels over 2006-07, by early 2008, Cheryl’s need for constant care grew to the extent that Mike had to enlist the services of a Memory Care facility in Portland, where he was able to still spend time with her daily, but finally receive a modicum of rest from his exhausting role as primary caregiver.

Cheryl’s earthly journey came to an end this past Monday morning.

Cheryl’s death obviously brings to the forefront of my mind, my younger brother Alex, who still clings to life, himself in the final stages of Alzheimer’s onset. He’ll be 51 in May.

Alex has been on the onset-slowing AD drugs since his diagnosis in late 2004, which has helped to delay his decline. However he was diagnosed comparatively much later in the process than was Cheryl, and is currently in hospice care, likely in the final months of his life.

No, I didn’t forget about The Email
As is my wont, I now circle back to the reason I began writing this post in the first place: the sentiment from the chain email that Michelle forwarded to me this week.

It’s a fairly corny, but poignant and sweet sentiment that I would encourage us all to heed, never forgetting that life is but a vapor and that there are no guarantees. I’m hopeful you’ll get as much out of this silly verse as I did.

And as far as forwarding it goes, do feel free to cut and paste. I think this is one that everybody needs to see.
This was written by an 83-year-old woman to her friend.
*The last line says it all. *

Dear Bertha,

I'm reading more and dusting less. I'm sitting in the yard and admiring the view without fussing about the weeds in the garden. I'm spending more time with my family and friends and less time working.

Whenever possible, life should be a pattern of experiences to savor, not to endure. I'm trying to recognize these moments now and cherish them.

I'm not "saving" anything; we use our good china and crystal for every special event such as losing a pound, getting the sink unstopped, or the first Amaryllis blossom.

I wear my good blazer to the market. My theory is if I look prosperous, I can shell out $28.49 for one small bag of groceries. I'm not saving my good perfume for special parties, but wearing it for clerks in the hardware store and tellers at the bank.

"Someday" and "one of these days" are losing their grip on my vocabulary. If it's worth seeing or hearing or doing, I want to see and hear and do it now

I'm not sure what others would've done had they known they wouldn't be here for the tomorrow that we all take for granted. I think they would have called family members and a few close friends. They might have called a few former friends to apologize and mend fences for past squabbles. I like to think they would have gone out for a Chinese dinner or for whatever their favorite food was.

I'm guessing; I'll never know.

It's those little things left undone that would make me angry if I knew my hours were limited. Angry because I hadn't written certain letters that I intended to write one of these days. Angry and sorry that I didn't tell my husband and parents often enough how much I truly love them. I'm trying very hard not to put off, hold back, or save anything that would add laughter and luster to our lives. And every morning when I open my eyes, tell myself that it is special.

Every day, every minute, every breath truly is a gift from God.

If you received this, it is because someone cares for you. If you're too busy to take the few minutes that it takes right now to forward this, would it be the first time you didn't do the little thing that would make a difference in your relationships? I can tell you it certainly won't be the last.

Take a few minutes to send this to a few people you care about, just to let them know that you're thinking of them.

"People say true friends must always hold hands, but true friends don't need to hold hands because they know the other hand will always be there."

Life may not be the party we hoped for, but while we are here we might as well dance.

blog comments powered by Disqus