January, 2007
Fighting the Good Fight

Occasionally I am asked if Jan Marini Skin Research supports a charity. The answer is yes, but it is a little more involved than just a simple affirmative. JMSR supports a huge variety of charitable causes. Early on when I wrote our mission statement, I was serious about every word, not the least of which included “partnering” with our customers. In my mind partnering was all about assisting our resellers in reaching their goals and giving them the tools and support to promote their success. Many of our resellers are passionate and compassionate about using their business influence to further the work of various charitable organizations and causes. My belief was that JMSR should and could indirectly participate in many worthwhile fundraisers by donating product, money and time via our customers’ efforts. Over the last almost 13 years we have sent out thousands of large and ornately fashioned JMSR product gift baskets to be auctioned at events ranging from breast cancer, cancer in general, medical research, environmental causes, (one event was so obscure that no one I knew had ever heard of the plant that this group was fighting to save), causes for autism spectrum disorder, aids, the homeless, battered women and abused children, burn victims, heart disease, strokes, the mentally disabled and the list goes on and on. In fact, it became necessary to create a dedicated office space that became known as “the gift basket room” in order to keep up with the requests.

 There are also donations to little league organizations – always in need of uniforms – schools raising funds for extracurricular activities and sometimes even just the basics crucial to a sound educational process.  We have supported the Shriner’s Children’s Hospital.  There have also been walk-a-thons, marathons, bike-a-thons, rollerblading-a-thons and even a bubble gum bubble blowing-a-thon.

After 9/11, JMSR undertook our own fundraising project to donate money to the educational fund for victims of the 9/11 tragedy. We’ve donated our SPF 30 sunscreen to the US troops in Bosnia and JMSR sent sunscreen to the firefighters during the Arizona wildfires.   I have also made of point of donating my time to speak at fundraising events such as those for Malignant Melanoma. As you all know, I am passionate about skin cancer awareness and sun protection.

On a personal note, my beloved and treasured brother Leonard suffers from Multiple Myeloma, an extremely rare and incurable form of bone cancer. I try my best to turn my feelings of helplessness, inadequacy and sorrow into ways to further the research of this somewhat orphaned disease and to enhance the quality of his life.

So I think the question that people are really asking is, does JMSR have one particular charity or cause that the company represents? Well I have pondered that question endlessly. You see I tend to have a rather optimistic if not unrealistic view of my mortality. There is a small illogical voice that tells me I will live indefinitely, with youthful looks and vitality, and always with grace, independence and dignity. I will embrace change and calculated risks, eager for the next business challenge, setting an ever-higher benchmark for personal accomplishment. And then, occasionally on a long and sometimes sleep-interrupted night my mind tiptoes ever tentatively to the thoughts of my mortality. Ugly thoughts to be sure. There are so many possibilities that can befall every one of us from the inevitable to the crazy freakish and unpredictable occurrences.  As my mother used to say, “No man knows the time of his death or how it will occur.” Yet, we all fervently hope for a quality of life and meaning that ebbs gently and softly to closure. A life without the suffering of incurable disease and debilitating illness.

What illness resonates with me the most? I know the answer. I have sequestered it away in my mind for many years, pushing back at my worst fears. Even now as I write this I find it excruciatingly uncomfortable to consider the harrowing and incalculable toll of Alzheimer’s Disease.

As a young teenager I overhead a discussion involving a distant relative who doctors believed had died from Alzheimer’s. How, I asked, does someone die of forgetfulness?  My mother summed up the illness as succinctly as I have ever heard. “It’s not about forgetting where you put your glasses. You forget that you wear glasses and then you don’t even remember what glasses are used for.” I remember clearly the chilling implications that flooded my thoughts. Her simple description enlightened me in way that was somehow personal and intimate. To this day it holds more meaning than the complex medical jargon and detached discussions of amalyoid beta protein, placques on the brain, and tangled masses of neurons. 

Alzheimer’s is not a disease that is selective to men or women. It knows no social or economic restraints. It is not caused by a lack of healthcare or carelessly bypassing some preventative measure. Even with all the admonitions to keep our minds active and involved, no one knows how to prevent this disorder. No one knows precisely what causes it. No one knows how to cure it. The best and most advanced therapy merely slows down the inevitable relentless course of the disease. I can not imagine anything more cruel and destructive, not only to the victim but to families and caregivers whose lives are consumed by this monstrosity.

Brilliant, kind contributing individuals who have imprinted and enriched our lives become disconnected from the meaning of even simple tasks that we all manage effortlessly and without contemplation. Slowly they lose the memories of their loved ones and friends, the milestones, sorrows, joys and frivolity, opinions and unique quirks that we call personality and all that makes us innately human. Rita Hayward died of Alzheimer’s, as did President Reagan. Recently the actor who played Scotty in the old Star Trek series succumbed to complications from the disease. Currently the actor Charlton Heston is in Alzheimer’s decline. 

Spouses that spent a lifetime rich in shared discovery and emotional depth, search for even a small reminder of the person “they felt they could not live without.” The person whose body continues to function, but whose brain has deteriorated into a blank void where there is no sense of self or the ability to connect with anything. Eventually, the brain is even erased of the memory of even such autonomical and life supporting functions as how to breathe. And then they no longer exist. But in truth, they have ceased to exist to themselves and the world for a very long time.

In the unfathomable grief and hopelessness that accompanies years of torturous decline, caregivers are thrust into a treacherous living hell. If they cannot afford assistance spouses or sons and daughters are consumed 24 hours a day. As the disease progresses, for a short time, there are still the occasional transient degrees of cognitive awareness.  Short of shackling someone to a chair or locking them up, how do you prevent them from wondering off, or grabbing the car keys and attempting to drive to some vague destination? Perhaps they could even set the house on fire when their sense of what they have routinely done in the past is vastly different from their ever fluctuating skills and competencies at present.

Caregivers are thrust into a poverty of spirit and emotion. Their partner, their support system, their confidant is gone in every tangible way and yet the implied expectation is that they will lovingly if not dutifully sacrifice their interests, social interactions, self fulfillment or any life that resembles normality.

They are frequently abandoned, perhaps not intentionally, by other family members and friends. After all, we rationalize, and we have our own busy and happily chaotic lives that require our attention and nurturing. And, if we are truly honest, many of us are ashamed that we find it both difficult and repugnant to come face to face with a reality over which we often have no control.

Tragically, the caregiver becomes a victim of Alzheimer’s in ways that, while different, nevertheless slowly and insidiously rob them of their identity.

My friends, the fact is that we are all going to live longer. Every day strides are being made to cure opportunistic aging related illnesses. The future for longevity and quality of life is increasingly brighter. I, for one, plan on being around for a very long time. I believe it is my right, as it is everyone’s to enjoy a healthy and productive life. 

But the harsh reality, as it stands at present, is that with a longer life span we are faced with increasingly high numbers of senile dementia and Alzheimer’s. In fact researchers are predicting that in the near future this disorder will be prevalent in crisis proportions. We will not be able to dismiss or ignore the impact it will have on each and every one of us.

I don’t have a neat and tidy way to conclude this message. I have far more questions and fears than I have answers. I know that there are countless worthy causes that have a personal resonance for the individuals who chose to pledge their time and support and that Alzheimer’s, however hideous, is just one of many disabling and crushing maladies.  Still, it is this disease that has grabbed my attention like no other.  Its total unpredictability is terrifying and the very real possibility is that I and every one of us could be at risk for reasons that are not yet fully understood.  No, I don’t have answers, but I know it will take a collective effort. At the very least, I welcome your thoughts.