This July, I will be riding a metric century to support the Alzheimer's Association of Massachusetts and New Hampshire. All proceeds go directly into research and supporting families who are dealing with this disease. Everyone has a reason for riding. Here's mine:
On
February 22, 2008, my grandmother, Ethel Boyce, died at age 73. From the
surface, it seems like such a simple story: a woman dying. It was anything but.
Because, you see, my grandmother died from early onset Alzheimer’s. And, after
a struggle spanning nearly a decade, she succumbed to this terrible disease.
I could
go on and on about the facts of Alzheimer’s. Such as every 68 seconds, someone
develops the disease. Or that 70% of people with Alzheimer’s are cared for at
home by family and friends. Or that Alzheimer’s is the 6th leading
cause of death in the United States. See these facts are important, and
certainly drive home a certain message. But, in reality, there is only one fact
that matters: there is no cure. And that fact, as simple as it is, is
unacceptable. But for now, back to my story.
Growing
up with a grandmother dying is always tough. When I would tell people my
grandmother had Alzheimer’s, they would “be sorry” for me, but they didn’t
really understand. To them, the face of Alzheimer’s is something similar to “The
Notebook.” They think Alzheimer’s means simply forgetting people, but still
living a functional life. They think one has bouts where they remember
anything. They think it’s a civilized way to go and one day, while still able
to do anything a “normal” human can do, they go peacefully. That image could
not be farther from the truth.
Understand,
Alzheimer’s is one of the least civilized diseases there is. It starts with
small things. They forget the basics such as names and places. Soon, my
grandfather can no longer care for my grandmother at home, and, once she goes
into a nursing home, my grandmother is never the same. Slowly, the forget how
to walk, talk, eat. And they are left as nothing, simply a body lying there,
capable of doing absolutely nothing for themselves. No matter how hard I try,
it’s impossible to describe just how terrible it is.
And,
while the physical trauma is bad enough, I think it’s the emotional trauma on
the family that’s the worst. We used to go visit my grandmother pretty
frequently in the nursing home. As her disease progressed, we visited less and
less. And, honestly, I wanted to visit less and less. What would make me want
to visit a woman who had no clue who I was even though there was a picture of
me on her wall that she looked at daily? Of course, these thoughts made me feel
guilty. It wasn’t her fault she didn’t know me. It was this stupid disease that
shouldn’t exist. Even worse, there were moments of false hope. I remember
vividly the worst of all these moments. It was my grandparent’s wedding
anniversary. My grandfather has already succumbed to lung cancer. My
grandmother was closing in on her time and then she said it, “Donald.” It was
the first coherent word that come out of her mouth in months and it just so
happened that it was my grandfather’s name on their anniversary. Naturally, we
all got excited thinking maybe things were getting better. But, we all knew
that was impossible. It was simply some random brain connection that occurred and
she would continue deteriorating to her death.
One of
the worst parts of the disease is that at first glance, the patient seems
incredibly healthy. Heart, lungs, liver all look incredible. Besides the brain,
the patient is often in great shape. It seems the exact opposite of Lou Gehrig’s
disease. One would think this would be a good thing, but it’s quite the
opposite. Because their body is so healthy, it takes a very long time to die.
It takes an excruciating amount of time for them to die. This means you get to
watch them step by step die. And, you know it’s coming, but it never seems to
come fast enough. And with that, comes the absolute worst part of the disease
in my part.
I wanted
my grandmother to die. That statement alone should make me the worst person
alive. I kept wishing that my grandmother would die already. I knew the body lying
there wasn’t actually my grandmother but just that, a body with no person
inside. But, until that body gave up, my family could not move on. Regardless,
there is nothing worse than wanting someone to die and having to live with the
guilt that comes along with that thought. How could I possibly want my
grandmother, my own flesh and blood, dead? It seemed like the ultimate betrayal.
But, regardless of how much I wish I didn’t, there was nothing I could do to
stop myself from thinking it. Because, I knew, deep inside, that my grandmother
was long dead, regardless of the fact that her body still had a heartbeat.
Now,
when it seems like it couldn’t get worse, it does. Because, Alzheimer’s is hereditary.
So, we know that it runs in the family. My grandmother’s mother and my
grandmother both died from it. This means, there is a high likelihood that my
mother, my sister, and myself are all likely to carry the gene for the disease.
But, it doesn’t have to be this way. Out there somewhere is the cure to this
terrible disease. A cure that will save millions and millions of people. A cure
that will save all those families from having to watch a loved one die in the
same way I did. Out there is the cure that could save my mom’s life or my
sister’s life, or even my own life. And, the sooner we find this cure, the
sooner I can stop worrying about the future.
So, what it all comes down to is
that I’m scared. Scratch that, I’m terrified. I’m absolutely terrified of ever
having to watch my mother go through such pain. Of watching the woman who has
shown me how to be a decent human being slowly wither away to nothingness. And,
further, I’m terrified that my future holds the same fate. That I will have to
experience such a disease and there my future children would have to watch me
go through it. So, maybe it’s selfish. Maybe, the whole reason I’m supporting
this cause is selfish. So be it. I am okay with that. All I know is that every
dollar donated is one dollar closer to me avoiding this fate. And, if there’s
one thing I know, I can’t afford to experience this disease again. Because, I
know, if I did, it would be the end of my life.
If you wish to support me in my endeavor to end this disease, please visit my donation page at:
alz.kintera.org/ride2014/sarahcusson
.jpg)