This is a bit out of the ordinary type of post for this site, but bear with me for a minute.
So I am sure many of you have heard about ALS now due to the ALS Ice Bucket Challenge. Two years ago when my grandpa died from it, most of you probably didn’t.
I was happy when I saw the first Ice Bucket challenge. I thought it was a neat way to raise awareness, however, I never would have thought it would have become this wide spread.
Growing up without my Dad, my Grandpa became my father figure from a very young age. A few years ago my Grandpa’s health began to decrease and he developed dementia. He also began getting weaker and was losing weight. Doctors feared it was cancer, though no tests showed positive signs. It started with small things. He was having trouble turning the car key, it grew harder to understand him as his speech began to slur and he began stumbling. Eventually down over 50 pounds and great muscle loss, we had to bring him to the hospital. In the hospital, after many tests, he finally met with a neurologist who was able to give us the answers we were looking for. He had ALS. It is terrifying and heart breaking to watch the strong, brilliant man who helped raise you, turn fragile and revert back to a child-like state.
Long story short, we were able to have him come live in our home and care for him until his death a month after his diagnosis.
Now I get that people will get annoyed with the ALS ice bucket challenge. You can’t please everyone, and with so much publicity with come with negativity of course. But lately I have been seeing some ignorant comments on my Facebook that just get me angry. For example, a person suggested preventing the disease with exercise is the way to really help. In fact, it is not. Sure, being healthy can help with many things in life. But my Grandpa was active every day of his life. Another thing, the nickname for ALS is Lou Gehrig’s disease. Lou Gehrig was a player for the New York Yankees. I think it’s safe to say he was fit. So no, your gym selfies will not help ALS. If that’s your thought, are you even donating? But publicity is publicity.
Another person on my friends list put up a Maclean’s article called “Why The Ice Bucket Challenge is Bad For You.” The article goes on to explain how ALS isn’t severe enough to warrant all of it’s donations and is saying we should donate to more severe diseases stating that “only” 600 people in Canada die from it a year. The article however, does not go on to tell me how the bucket challenge is actually bad for anyone. I think it’s a pretty severe disease.
Let’s talk about what ALS is for a second.
It is a guarantee to a slow, painful, paralyzing death. It slowly deteriorates your muscles causing paralysis. In the end you are in pain, you can’t walk, or talk or eat. You have to use a suction machine to suck out saliva since the person is no longer able to swallow. It is so severe that people actually go to court so they can have the right to be “put down” when it becomes severe so they don’t have to endure the pain and restrictiveness of the disease. It’s severe enough for the courts to allow them the right to kill themselves to prevent that end. This disease leaves no room for dignity.
I understand other families are affected by other diseases which are also traumatic and all around awful, but I don’t think that means you should go around saying another disease doesn’t deserve help too. I’m not typically one to preach about medical conditions, or what you donate what to. You don’t have to donate to ALS, I can’t make you. But I do feel that it’s not right to say that because it isn’t wide spread enough that it doesn’t deserve funding! Eventually the hype will die down and another cause will come to the spot light and it is just as worthy as this cause. With every one person diagnosed, their friends and family are affected. Personally, I lost my favourite person in this world to ALS and it hurts every day, and I get mad at all of the moments in life that I will miss with him because of this disease. And I can see how the death of this one person has completely changed our family dynamic. I feel like a lot of people get annoyed with the hype because they are ignorant to it, they don’t understand it and they don’t try to. Those who know about it, even if not affected personally, I feel have more patience and understanding when it comes to the videos, the donations and the hype. ALS has never been in the spotlight, and I am hoping that it will be able to make some real strides thanks to everyones donations.