However, there has been something popping up on the daily that I have not been looking forward to, and that is these ice bucket videos.
Don't get me wrong, I'm typically all for fundraising efforts and awareness spreading when it comes to something as terrible as a terminal illness.. but this one has struck too close to home for me.
In the summer or 2011, after many months of weight loss and confusion, my father was diagnosed with ALS, Amyotrophic Lateral Sclerosis (or to those of you in the UK, Motor Neuron Disease or Charcots). As months passed quickly, he became unable to eat on his own and required a surgery to insert a feeding tube. His body turned on him, and eventually, what was worse than any physical pain, his mind began to fade. Not only did my father have ALS, but he also developed dementia. It is very rare for such a thing to happen, but not completely unheard of. My father was not a drinker. My father was not a smoker. My father was not obese. My father was a healthy, intelligent, generous man that was so full of life and love and creativity that none that knew him could comprehend a world in which he no longer existed. Life, however, had other plans. My father lost the sparkle in his eyes, he lost the ability to tell the stories we loved to hear, or play his harmonica. On Thanksgiving Sunday, my father left us. It was absolutely the worst thing that could have ever happened to our family, and it left us lost. We are still trying to understand what happened. We are still trying to rebuild. It isn't easy. This is what happens to families, and this is what we're left with. We're left with questions, we're left with nightmares, and we're left with a pain in our hearts that will never leave us.
What I would love to see is actual knowledge being spread. I am so relieved that people are learning those three little words, as much as they scare me, because I would never wish that horror on my worst enemy. What am I not seeing, though, is how the illness that stole my hero from me is an excuse to have a camera pointed at your face while you chug a beer and have water dumped over your head.
From what I understand is that the challenge is to test your endurance, and if you opt out you can pay a 100$ fine. So a donation to a worthy cause is a penalty, is it? Some might argue that they are spreading awareness, but could they honestly tell me what ALS even stands for?
There are a million things I'd rather be doing than revisit my father's illness, trust me. I am not writing this to be spiteful, or condescending. I am writing this because I honestly feel that it is important for people to understand exactly what ALS is. I want people to understand that ALS can happen to anyone, at anytime. I want people to understand that ALS does not discriminate. It can take the young, it can take the old. It can take the weak, or the strong. It took my father. He was also a husband, an uncle, a scout leader, a volunteer, a friend, and a hero to many. His loss continues to be felt in our lives every single day. If there's anything that could prevent that kind of loss in someone else's life, I'm all for it.
So I guess what I'm trying to say is this.. when you accept the ALS ice bucket challenge, please think about the message you are sending. Are you really raising awareness, if you don't know what ALS stands for? I think it's worth a look. Maybe it will affect someone you love, but because of this you are able to recognize the signs and seek treatment early. Maybe your donation is that extra push that researchers need to discover better treatment?
There is so much we have to learn about this awful disease. There are wonderful people dedicated to finding out the cause, and hoping to find a cure. I will say hope, because we still don't know if there will be one, but if my words can help prolong someone else's daddy's life then I guess the tears I've shed writing this will be worth it.
Please think twice about 'getting iced'. Think long and hard about how your actions will affect people around you, you might not even know your actions have caused someone to hurt. There are many ways that are more respectful, and tangible to give. Be it sending your love and support to families, or making a donation. I encourage all to do their research.
Educate yourselves, and make a donation. That money will go to helping families like mine through covering costs of expensive equipment, medication, home care and maybe even therapy. Donating to research will help families like mine to get the answers we pray for every single day.
So maybe you're asking, what is ALS then? It is a degenerative neurological disease that slows the firing of neurons in your brain. It can affect your muscles, or it can affect your digestive or respiratory system. It can also bring about cases of dementia. It manifests in many ways, that are very difficult to diagnose. It is very hard for me to speak about objectively so I will provide some links below.
I hope that my words have not affected people in a negative way, or insulting anyone who felt that they were helping out. I am merely expressing my own opinion on a matter that has affected me in a deep way. I hope that my friends and loved ones can understand that, even if they might be affected differently.
Here are a few links to websites that give detailed information about the disease:
http://www.alsa.org/about-als/what-is-als.html
http://www.alsbc.ca/what-als
Here is a link to the ALS society of BC, who did all that they could for my father:
https://www.gifttool.com/donations/Donate?ID=1384&AID=1611
Here is my father, my heart and my hero. Thank you for your time and your understanding.
Amazing writing...thank you for taking the time to share with us....brought tears to my eyes...Your dad was one of a kind.
ReplyDeleteWell written, Lauren.
ReplyDelete