Tracy Solomon · @tracysolomon
21st Aug 2014 from TwitLonger
The #ALSIceBucketChallenge has raised a LOT of attention for ALS but...
The #ALSIceBucketChallenge is raising a LOT of attention for ALS. Do people truly understand the devastation, suffering of Lou Gehrig's Disease?
Powerful Video Every Ice Bucket Challenge Hater Needs to See http://mashable.com/2014/08/20/als-ice-bucket-challenge-haters/#:eyJzIjoidCIsImkiOiJfeDVsZWV2MmQ0bHVneGJ5cCJ9
It's very personal to me as well...read on.
I lost an Aunt (well actually a second cousin of sorts but we called her an aunt...) to ALS. When I say, "lost", I actually feel that is what ALS did.
I had always looked forward to getting old enough to have coffee and sit and play cards with some of the "older-than-me but super fun" women in my family.
When my aunt was diagnosed, I was already well aware of what ALS was and it was heartbreaking to know this bright, funny, sweet, always talking and laughing, super interesting woman would soon be getting locked away in her own body.
I knew it would be worse than any prison sentence and it would be devastating for her to be aware, hear everyone, see things going on, people talking about things, talking about her and she would be unable to respond, correct anybody or add in her $10 worth of opinion. She had way more than 2 cents to offer.
She was particular, smart, had great taste, always took very good care of herself and I couldn't imagine her thoughts when she learned of the diagnosis, prognosis and her outlook now going forward.
I was very occupied at the moment with my 2 year old having just been diagnosed with leukemia AML, reaching remission, relapsing and then a long search for a marrow match to receive a transplant ASAP.
I was able to see my Aunt a few times when she came to the hospital or I went to her house. During that time, I watched my aunt have her independence taken away, lose her ability to walk, her bodily functions deteriorate, lose her ability to talk... At that point, although she couldn't talk, she could communicate with expressions pretty well especially with those who knew her. It really was a jolt and very saddening and heartbreaking to me when I knew her voice was gone.
Then her eating ability was lost. If I am correct, she started with choking and then more and more couldn't eat. Breathing on her own was lost so she was put on machines.... Instead of the smell of coffee and perfume, things smelled like plastic or nothing. Instead of hearing her talking, carrying on and laughing, it was quiet and there was machines and people talking quietly visiting.
There is no easy way to lose or say goodbye to a loved one but what hurt the most losing my Aunt to ALS is I feel as though it took her hostage first. It made everyone who loved her watch her suffer and know there was nothing they could do but help her to the end and then lose her after already losing her.
It put the burden on her also knowing all of this in advance. I hate ALS and I want it gone.
I liked the idea of the bucket campaign this year because I think ALS needs to "Kick The Bucket"
I don't belittle any disease. Fighting health matters is a battle and each person is different and affected differently by whatever comes our way.
ALS is not a silent killer but instead silents its victim.
If a person is in pain, emotional turmoil, scared, sees something horrible happening, desperately needs something or just anything, they are silenced.
As the disease is progressing, the fear of knowing it will get worse is what makes this something unimaginable and desperately in need of better treatments and a cure.
In memory of all who battled ALS, for those who've endured and cared for a loved one going through this, medical and hospital staff caring everyday as well as the countless ones who are working to improve care and treatments, I hope the enormous participation in the #ALSIceBucketChallenge will continue to flourish into more ideas, funding and bring hope as well as a cure.
~Never forgotten, always loved, making a difference.~
Tracy Solomon