December 18, 2002
I was driving up I-684 with my dad and brothers to look at a piece of property my family was thinking about developing. I remember it was grey skies, and a little on the cool side but not all out cold. It may even have snowed further upstate a bit later in the day. We didn’t get too far under way when my dad said “You’re mom and I went to see the doctor to check on some things and he said that your mom has Alzheim”.
So I asked “Do you mean Alzheimer’s, like the disease Nonna Francis had?” and he said yes. As I would notice over the next few years my dad didn’t like saying the word “Alzheimer’s” completely, so it would most often be cut short into “Alzheim”. Of course he knows it, and he knows just how to say it, after all he works in a hospital, but it’s almost as if he wouldn’t officially recognize the disease as an adversary by saying its name completely.
“So what do we do? I’m sure there’s a hospital that can take care of that.” I said. We talked about it for a few minutes more, but that was really about the size of it on the topic of Alzheimer’s as we drove on to check out the land further North in the next county. I was pretty sure I could go home and look around on the computer to find a hospital that could heal people with Alzheimer’s.
At the end of the day, I found myself back in my apartment searching the internet for a place which specialized in curing people with Alzheimer’s. Almost immediately I started seeing the results coming back with statements like “There is no cure for Alzheimer’s Disease”. But then I thought, well that’s not good, but at the same time having Alzheimer’s is not so bad, it just means my mom will be more forgetful than normal. When I was in college, my grandmother in England had it and she was forgetful as well but as far as I knew she got by on her own until she was older. In the last few years of her life she went on to live in a home, but I just figured it was a typical senior home. The Atlantic Ocean seemed to be an insulator between me and my grandmother, and I guess I never quite got a chance to see her struggle with this disease. So consequentially I never learned, and I never cared enough to do something about it.
To this day it bothers me to no end, to know how I dishonored my grandmother by not caring enough to learn what Alzheimer’s was, and how it devastated her life. The best way to describe me at the time was “Ignorant”.
As I searched the net for more and more information on Alzheimer’s my hopes dropped further and further into an abyss and my mind began to drown in thoughts that this disease was worse than I ever imagined. This disease was actually a killer, and unfortunately for my mom and my dad (as the future care giver) it was not going to be very merciful. There was going to be no quick and painless moment where one minute she would be here and the next she’d be gone. This was going to be a long slow ride down hill to the end.
You can’t imagine how mad I was to find out this was what my mother had in store. My mom was the valedictorian of her nursing class, she was ultra smart and aced just about every exam she ever laid her eyes on, and Alzheimer’s was going to steal her ability to think??? Alzheimer’s was going to rob her memory??? Alzheimer’s was ultimately going to take her life??? What a terrible waste. Why???
I like to tell people that my mannerisms are probably 98% English and 2% Sicilian, but the more I learned how dark the horizon looked for my mom…the more I wanted to take this disease down. This disease pushing all the worst Sicilian buttons, and who knows more about revenge than a Sicilian? In my mind it came knocking on the wrong family’s door this year. But, what good was seeing any of this slowly oncoming sadness, or knowing how the world lacked the options in dealing with it if I didn’t know where to go with it myself or what to do next? I felt like an island with miles upon miles of empty ocean around me and I was going nowhere fast.
In early 2003 my Father-in-Law was diagnosed with Parkinson’s Disease which was also relatively unknown to me. He seemed to do really well and at the time I don’t even recall being able to notice it. No one seemed too concerned at first, because to most of us his movements didn’t look anything like those of Michael J. Fox. For a long while the family didn’t quite believe the diagnosis, and I can’t really say I know what actions my in-laws were taking to remedy it. But, again I went on the internet and started to look up information on Parkinson’s Disease, and quickly began seeing most of the same red flags I saw in my searches for Alzheimer’s. More often than not each entry was accompanied by the words “There is no cure for Parkinson’s Disease” somewhere in the web site.
I thought to myself “What is going on? How is everyone falling apart, and why are they still so young? Doesn’t this stuff usually affect older people?”
Ignorance strikes again.
In 2004, I was a complete beginner. Between the end of 2002 and 2004 I lulled around like most people doing little to nothing, as if I were resigned to my moms condition being quite unfortunately her fate, and my Father-in-Laws condition being something he (and we) would have to deal with in time.
I knew nothing of fund raising, networking, and raising awareness on behalf of a charitable organization. I knew even less about terminology, treatments, drugs, key individuals, and current events related to Alzheimer’s Disease and Parkinson’s Disease. What do charities for these diseases actually do? What would I possibly do for a charity? I felt very very very intimidated about stepping into an arena to which I was a stranger on all accounts, but fear was not enough to cage the inner feeling that something needed to be done to fight these diseases.
My over abundance of uneasy feelings and unanswerable questions were weighing on my mind along with the only four things I knew for sure. My Grandmother had passed away due to Alzheimer’s Disease. My mother now has it. My father-in-law has Parkinson’s Disease. And, someday I hope to have children who I’d like to spare even the slightest chance of ever suffering from these diseases.
What next? What do I do? Where do I go from here? Where’s the starting line in this race for the cure?
The idea’s for things to do to honor my relatives while raising awareness came and went. For some strange reason at the time I didn’t even know there were such things as the “Alzheimer’s Memory Walk”, and the “Parkinson’s Unity Walk”. Through-out life I’ve always preferred doing things my own way anyway, even if they were going to take longer, be harder, and come with loads of mistakes, pitfalls, and little to no guidance for me to follow. I’d learn.
I’ve always been a bit of a romantic, and loved the idea behind adventure – Big Adventure.
Being a kid from Lexington Avenue in Mount Kisco which is a very working class town in Westchester County NY, my family never really had much while growing up. I got all the newest (yet very inexpensive) clothes, and they would get handed down to my brothers holes and all then down to my cousin. That’s just the way it was and I didn’t know there was any other way. We lived across the street from a swamp, and next door to a bar with a parking lot right outside my bedroom window. People would come out drunk looking for their way home and knock on my windows and yell out side while my brothers and I shared the same bedroom trying to sleep. But, what happened outside the walls at night didn’t matter much. On the inside our walls were wallpapered with prints of Spanish Galleons, which could easily stir my imagination for adventure. There was a green book about Robin Hood, and picture books with artwork by Da Vinci & Michelangelo in them. There was a classical guitar hanging by a string from a nail on my wall. There were KISS albums! All of them were scratched, but still taking my constant daily abuse on our little closable white record player with its orange handle. I looked at all the things in my bedroom and thought they were great. Someday I’m going to grow up and sail to other places in the world, and I’ll play guitar and I’ll look at the buildings and art work by these icons, and I’ll do all this with my family and my friends. I thought everyone loved galleons, and the thought of a great adventure. I thought everyone loved heroes as much as I did. I thought everyone liked classical guitars and KISS. Also almost without saying, who in the world could possibly not idolize famous artists like Da Vinci & Michelangelo.
You’re probably thinking, where am I going with this?
The common threads are, Big, Larger-than-Life, Romance, Heroes, Adventure, Doing things that were good, admiring people’s talents and super human efforts and of course music.
In 2002, a few months before my mother was diagnosed with Alzheimer’s, I was standing in Borders Book Store at a magazine rack one day when a thought came to me while looking through a magazine. I was hooked instantaneously. It was like being hit by lightning. There it was, an “unfinished” romantic adventure, a goal, something to work toward, and bonus…it was larger-than-life. But, as life and luck would have it, I had no money to do this and no time to take off work. But regardless dare to dream, I researched everything I could about this idea for the next few years.
Months came and went, I talked to people about it, I thought about it, I was all over the internet learning everything I could about it. I ate, drank and slept it. But, without having a “good” reason, I never really ever had the cause to move ahead with it for reasons other than “I want to do it”, and that would be extremely selfish motivation, and I really hate selfishness. Looking back, I think that’s probably why it just stagnated and never quite moved forward into reality.
Flash forward to 2004, and I was married, still living in Mount Kisco, and still not the most wealthy person in the world. Seeing an episode of “Lifestyles of the Rich and Famous” was not something you were ever going to see featuring an Apprentice of Architecture like me, so paycheck to paycheck was basically the way of life.
I remember thinking there must also be lots of people in my living situation out there all struggling to get by, and coping with family members who had fallen ill with Alzheimer’s and or Parkinson’s. I thought they must know that raising funds is the only way to fuel research, but how could I get them to make contributions. How could I inspire them to give a little of their livelihood to drive progress in research? What could I give them in exchange for making a donation? Maybe I could create an event that would unfold like a story? Maybe by following the story, and the characters in it they would be moved enough to think “Hell if they can do all this just to raise awareness for these diseases, then I’m going to make a donation to their charities, and then maybe someday I’ll join them.”
It was the notion that people loved to hear about a great adventure and a good cause that was mingling in the recesses of my mind for quite some time as I tried to think of ways I might be creative in designing a charity / fund raising event on behalf of Alzheimer’s and Parkinson’s.
As is sometimes the case life throws you a clue when you least expect it. Sometimes you miss it, and sometimes you don’t. Other times it sends you someone who whispers the right words into your ears. They plant the seeds of an idea. They make the connections you were missing. They turn on the big engines you never knew you had and all of a sudden the motors running, and you’re in the drivers seat moving at light speed toward your goals.
There was a person like that for me, and I’ll tell you about her later.
But, I will say that from the word go I did not waste another minute of another day. I had aligned my mind, my charity, and my great adventure to conquer the “Wettest Place on Earth” with my desire to champion a cure for Alzheimer’s Disease.
I know you probably picked up on the fact I just mentioned Alzheimer’s but not Parkinson’s. I’ll explain more in my next post.
So my people ,my family, my friend and my fellow advocates:
In closing… the moral of this still unfinished (actually just beginning) story is that we need to “Act”.
We absolutely cannot sit by and hope that someone else is out there raising awareness and funds for a cure to the disease which impact our families. We the people need to do this.
Fund Raising is the life blood of Research. Without it work on research will not be done.
We might take quite a while to find just the right way for us to raise awareness, or we might know in a heart-beat, but regardless think about it day in and day out until you decided how you will make a difference. Every effort counts no matter how large or small. Doing nothing gets us nowhere, but giant leaps and baby steps move us forward toward our goal to help find the cures for Alzheimer’s Disease and Parkinson’s Disease.
So my friends, think hard. Look around you. Choose something. Design an awareness / fund raising project of your own. Volunteer for a charity. Read, Listen & Learn the vocabulary used in discussions about these diseases. Don’t be intimidated by not knowing something, just try your best at learning something new every day or every week. Talk to the people around you, friends, family, even strangers, and tell them about what it’s like to have or live with one of these diseases. Pull the right strings & touch their heart, so that the next time someone asks them for a contribution for research…they know a little about your experience, and they’ll give.
Become an advocate.
We the people need your voice to be heard. We the people need your story to be told. We the people need your energy and your free time. We the people need you to try.
You don’t have to be rich. You don’t have to be well known. You don’t need a reason to do something good. Just try.
As always: No experience necessary…you can learn as you go along.
World up,
Enzo
My self-taught formula for success:
“Failure + Failure + Failure + Never Giving Up = Success.”
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