RE: ALS Bucket Challenge So here’s the deal. I previously posted my mother’s, Marilee Moran, picture in lieu of taking the ice bucket challenge to bring awareness to this terrible disease, because I felt I am more than aware of the disease; I experienced it first hand when my mother passed away from it on July, 18 2005 after being diagnosed in August of 2004. We sat together, held each other in the doctor’s office bathroom and cried together, gathered ourselves together and set out on the road of terminal sadness and death along with our family. When she was first diagnosed at age 60, we were made aware that it was a misunderstood and incurable disease and would lead to death within 6 mos-5 years once diagnosed… the reason for the time frames varies because the disease doesn’t attack the same way for everyone. For some, it starts in the legs, for others it starts in the face, for others it starts in the hands and arms, for others it could start right at the chest area. The other reason the time frame varies is because by the time someone finally goes to the doctor to figure out why their foot drags sometimes, or they feel a tingling in their arm, or they can’t seem to write their signature without shaking or even have strength to hold a pen in one hand… the list goes on about the small symptoms that go undiagnosed while the disease continues to spread. While numerous trips to the doctor and different specialists, various tests, etc. go on, so does the disease in the body… until it’s finally discovered. At this point, depending on where on the body the disease happened to start, the time frame of life and prognosis begins. Some live for many, many years and the disease progresses slowly, while others experience a quick spreading of neuropathy and eventual death. Ultimately, the people afflicted by the disease become a prisoner in their own body, their minds totally intact and knowing what is happening around them even if they can or can’t communicate… they are left at the whim of a disease that will eventually literally suffocate them when their diaphram muscles will no longer sustain the strength to breathe with or without the help of a breathing apparatus (bi-pap, c-pap, even life support). People who were once lively, fully self-sufficient people are completely aware of their degrading outward body; they have to deal with the fact that they have to be taken care of by other people, they can no longer do things they would like to do without help, things we all take for granted… going to the bathroom and wiping, scratching your own nose when it itches, getting dressed, communicating/simply talking, eating, walking, and the worst of all expressing love. Some are lucky to have the funds to get a dragon voice program (look it up) to type out “I love you,” via eye movements or using a stick using their mouths, or typing if they are lucky enough to have use of their arms, but in other cases, like mine… I’ll never forget getting a hug from my mom when she asked me to put her useless arms around me to get that hug… it was one of the most heartbreaking and heartwarming experiences I have ever experienced. So, if you’re tired of seeing people dump buckets of water on their head to raise awareness for this obscure disease, so be it, make a donation. If you are tired of seeing people dump water on their heads and think it is a ploy to look silly and look good for it in the guise of doing it for a charitable cause, so be it and encourage a donation. If you hate seeing Californians waste water in an effort to raise awareness, then encourage a donation. If you’re tired of the bucket fad… I say this to you; I’m tired of pointing to pictures to show my kids who their grandma was; I’m tired of wanting to pick up the phone to call my mom and tell her about anything; I’m tired of looking back at my behavior when she was alive and feeling guilty for feeling upset for having to clean her after going to the bathroom, for leaving my husband’s bedside to take care of her, for feeling guilty that I was upset that her disease made me change the course of my academic outcome to go on second opinion trips to make sure she actually did have ALS and not some other affliction… If you think you’re tired, think again, because there isn’t a day that goes by that these and other thoughts don’t cross my mind…I am tired, but most importantly, I’M THANKFUL FOR THE BUCKET CHALLENGE! Finally, awareness has been spread about this horrific obscure disease that no one ever really knew about until now… so, if you’re tired of it all, kiss my ALS and deal with it. I’m wondering if if my mom were here to see this social, conscious phenomenon… What would she do? I can say with a certain amount of certainty that she would sit in her wheel chair and either take a bucket over the head herself, or watch all of her kids take a bucket over their heads in honor of her suffering and the suffering of her children… she would probably laugh and cheer as each of us took the bucket in order to raise awareness and raise money for an organization to provide resources for all involved in the pain and suffering brought on by ALS. Ive been challenged by David Podell and Gus Moran, and I will take that challenge double fold. Video to follow when I get it all together...
Posted on: Fri, 22 Aug 2014 05:33:40 +0000
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