The summer of 2001 I was a university student enjoying a break from school and a summer of employment at the YWCA in Hamilton. My mum, Jill Rumble, was the CEO and I loved to hang out and chat with her in her office during my breaks. I was no longer a kid or irritating youth, I had my own opinions and we were finally at that great place where we were becoming friends. Today was a little different. She was sitting at her desk, appeared a little stressed and asked me to listen to her voice mail which she played out loud. I listened to her phone greeting smiled at her Aussie accent and she asked it I thought her voice sounded different. A weird question and I laughed it off saying no, she sounds like she always did – Australian.
A few weeks later my mum was sitting at the computer desk in our kitchen area and shared with me that she had been diagnosed with ALS. Something both her doctor and Google had told her was horrible and deadly, she wanted a second opinion and would be seeing someone else. Again the response came back as ALS.
Over the next three years our family traveled, made the best of the situation which wasn’t great. She would trip and fall as a result of her lack of balance and muscle response, get cut up and once even knocked herself unconscious. She would later walk with the support of a cane (which she hated) and then the use of a wheelchair. She developed blood clots and my father and I had to give her daily needles of thinners, not an easy task but one we had to do. She also tried countless trial medications with toxic side effects, including a muscle relaxant which one time left her completely immobile, a functioning brain with a broken body. Something that near her end would be the norm.
My family was pushed to our limits we were challenged daily with our new normal, but we banded together, we loved deeper, and we became stronger, together.
When I first saw posted on Facebook of the Ice Bucket Challenge. I refused to learn more. I was angry that someone on my feed would dare to trivialize something so close to my family. They didn’t know anything about ALS, so how dare they get involved. And after a few days of it not going away, infact only growing stronger I did my research. The ALS Ice Bucket Challenge has done amazing things for the American and Canadian ALS society with the American association raising almost $80 million at time of publish, and the Canadian association with near $8 million. Sure it has created awareness for the disease, but then people, regular people, who two weeks ago knew nothing about ALS are putting their money where their Ice Bucket is and have helped raise (in the case of the American association) over a years worth of donations in less than a month, and that will make a difference.
If you continue to be skeptical like I had been than let this post put a face and family to ALS. Please share it with those who might be interested and please donate here to ALS Canada.