I was around 7 years old in the year 2000 when my father showed symptoms and was diagnosed with ALS. Ultimately, after an 8 year battle my father would pass in July of 2008 when I was in high school.
With ALS being all, I knew as a child, naturally it has shaped my life. While I had a normal childhood full of friends, play, and laughter, it was also full of service as a caregiver to my father. My mother and my 3 siblings and I all took turns helping my father with more and more tasks as his physical body failed increasingly up until his passing. Like most, I didn’t realize that life in my household was different from others until sharing stories with peers. Not only was it surprising that many of my peers didn’t help their father with daily activities but that they didn’t even know what ALS was.
Fast forward many years and the ALS Arizona Chapter invited me and two of my siblings to be “guides” in the Teen Program. The coordinator, Jill Candland, explained that the association wanted to provide a space of safety, of normalcy, of reprieve and leisure/fun, and of understanding to youth who deal with the challenges that I went through as a child. Now, well over 5 years into serving as a volunteer to the program I am so grateful to have the opportunity to open up and share with others who are just like me, albeit just a few years younger. I’m so glad that there is a place where these kids don’t have to battle with the effects of ALS on their own but have the guides who have gone through it before and have peers who are in the same struggles and tensions. I look over my life and my ALS Story and am so glad to serve in a capacity that I wish someone would have served me in. There was no association in my area and there certainly wasn’t a program who thought of and had a heart for the family of the patients as well and what the children go through. My ALS story is one of mourning and struggle as a child and teenager but ultimately, I reflect and see that out of the grief and struggle my story has formed into beauty, strength, appreciation, and giving back. I choose for My ALS Story not to be defined by death, rather to be a blessing to others from lessons learned in the struggle.