Since Pete Frates, former Boston College baseball captain,
took the ALS ice bucket challenge viral there has been a huge boost in
donations. The ALS Association reports that as of August 19th the
donations are at $22.9 million. That money goes towards research, public and
professional education of the disease, and patient and community services, as
well as fundraising efforts. The ALS Association is also starting off their
season of Walk to Defeat ALS which is another way to raise money.
I have seen the ice bucket challenge take off like a rocket
from celebrities to politicians to everyday people have jumped in on this
bandwagon. Some commenters have complained about the water being wasted especially
in drought starved areas and I can understand that concern. Some commenters are
making cynical and snarky comments that the famous are only doing it for
publicity and if they wanted to donate money they wouldn't do the challenge,
they would simply donate the money. The others have said that we shouldn't be
forcing and shaming people into doing some challenge they don’t want to or
making donations they don’t want to.
This isn't the first time that celebrities and politicians
have gotten together to raise awareness for something. Bono is famous for it
and Mia Farrow has been an outspoken activist about the war with Israel and
Gaza. It doesn't matter that these people are famous and influential they are
still people and as such they have the right to care about something. We do not
have the right to judge them simply because they are famous. We don’t own the
right to judge anyone for trying to raise awareness and money for a terrible
disease.
Peter Frates and thousands of other people are dying of this
disease right now. The fact that Stephen Hawkings is still alive after being
diagnosed at 20 is an anomaly with this disease and I have no explanation for
that. There are estimates that 5,000 people are diagnosed with this disease
each year and 250,000 will die this year from it. It generally hits people from
40 to 70 but it can hit anyone anytime. It does not discriminate, it doesn't
care what race you are, if you’re in good health or bad or how you live your
life. This disease will attack you and you will die because there is no cure
right now.
My father died of ALS on May 16th, 2012 the day
before my husband’s birthday while he was on assignment for the United States
Coast Guard so it was just me and my 5 year old daughter. I was 6 months
pregnant with my now 2 year old daughter. I got the call at 3 am from my sister
telling me that dad had died while they were watching Glee. At that time he was
on hospice care and in so much pain that they had him on morphine but he loved
listening to the music so that’s what they watched.
He had only been diagnosed with ALS for a year. My family
had just transferred from New Orleans to Seattle and my dad lived in Oregon so
I was glad that I was able to see him from time to time. I regret now that I
did not see him more. My youngest sister is my hero. She quit her job and moved
in with my dad and stepmother to help care for him.
We watched as he lost the ability to walk and soon was
unable to use his hands, then his arms. It was the worst when his speech began
to slur. My father was brilliant, his mind skipped back and forth between
subjects. We could talk for hours debating religion, then physics, then
ridiculous things like Monty Python where we could quote parts of their movies.
He drove me insane too. He was so convinced he was right and looking back I
think he intentionally did it so I would try debate him and change his mind.
Soon he couldn't talk though then he lost control of the
ability to hold his head up and my brilliant, funny, stubborn, kind father was
trapped inside his body. You don’t lose the ability to use your mind when you
have ALS. Instead you are stuck inside this husk of a body that no matter how
much you try and move it. No matter how often you are screaming inside of your
head to move that stupid hand it just won’t move. Then you have to watch the
indignity of people bathing you, helping you use the restroom, of having your
youngest daughter and wife caring for you like you were a baby. The reality is
that you are an adult who is dying with no chance of a cure. You are
simply a mind inside a husk waiting to die. Can you imagine what that does to a
person? In most cases of ALS the diaphragm stops working, they stop breathing
and you die.
So you can say what you like about the famous people doing
all of this to be self-serving, you can complain about the water but
considering the amount of money pouring in I’m pretty sure those famous people
are making donations as well.
I will never have my father back and he will never meet the
baby I was pregnant with when he died. He will never walk my youngest sister
down the aisle when she gets married. He won’t be there for holidays or for me
to call when I see something or think of something that he would find
interesting.
Awareness for a disease that nobody really thought about and
money to help those who have it is a good thing. I think the world should stop
being cynical and mean. Try leaving the tiny sphere you have around yourself
and be a part of humanity even if it’s just to get doused with a bit of ice.
