My personal experience with ALS
I’m Liz. I’m the face (and tired fingers) behind My Grandmother’s Old Singer. I grew up as a crafty kid. My parents made sure I had no shortage of rock tumblers, looms, and dedazzlers. I picked up knitting with purpose when I was in college and have been knitting almost non-stop for the past 20 years. I started this business as a way to justify purchasing massive amounts of yarn. Along the way life delivered me a cause that would permanently reshape my life and drive the heart of my business.
When I was in college my Grandfather was diagnosed with ALS. He passed away not long after that. I was in college at the time and wasn’t closely involved with his fight against the disease. Not much was known about the ALS at that time. This was before the Ice Bucket Challenge hit social media…heck this was before social media was really a thing. Fast forward twenty years, my mother developed an issue controlling her foot whenever walked. Back surgery failed to help. Her foot fall kept getting worse.
She was ultimately diagnosed with ALS as well.
Watching my mother struggle with her illness often left me feeling helpless, wishing I could do more. I have never been great at expressing myself verbally. I am a textbook introvert and I would often feel uncomfortable with more outward expressions of emotion. I worried, maybe too much, about showing sadness or pain in front of her. Even through illness she was so strong. I wanted to show her I could be strong too.
As during so many other stressful times in my life, I turned to knitting to help me express how I felt.
I began to struggle with what to give my mother for birthdays and holidays. My mother was never someone that valued physical presents, but I loved how taking the time to create a handmade gift helped me express myself. ALS is characterized by slow loss of motor functions. As she lost the ability to walk and be as active as she used to, I struggled to find gifts for her. I worried that tradition gifts would only be reminder of things she was no longer able to do.
What good is a sweater if the texture aggravated her skin from constantly being confined to a chair or wheelchair? What good is a scarf or hat if she didn’t have the dexterity to put them on? What kind of gift could I make that wouldn’t simply be a constant reminder of her disease?
Then one day I took a scrap of faux fur and attached a magnet to each end. Violà! A scarf that didn’t need to be tied or wrapped! Easy on easy off! I didn’t know our then but that was the first prototype of what my business would become.
After a 3 year battle with ALS, my mom died in January 2018.
After my mom died, I spent almost a year letting the grief taint my love of knitting. The process of making felt hollow and derivative. I ultimately saw through the fog and the purpose of this business became clear. Provide beautiful handknit designs for people suffering from ALS. I love being able to serve not only individuals dealing with illness in their everyday life, but also loved ones that want to express how much they care but struggle to find appropriate gifts. I see it as a way to honor my mother, my dad and sister and also to serve a community of people whose struggle and grief I understand all too well.
The first piece I created was a scarf, named for my mother. The Marilue.
The second was a necktie, named for my grandfather. The JT.
Has your life been touched by ALS? I’d love to hear your story.
Contact me at Liz@mygrandmothersoldsinger.com