A Little Ice Never Hurt Anyone

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 19^th 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 16^th, 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.