It’s almost 10 pm on Labor Day and I’m just sitting down to write. In my bed, with the new season of The Great British Baking Show playing in the background. This is real life.
Today was a rainy and gloomy day, making me feel rather sad for people with any Labor Day plans that took place outside. It was a pretty standard Monday for me with getting to the gym, uploading my monthly favorites video (full transparency, that was also the post that was supposed to go up today, but I ran out of time and the mental bandwidth to get it done today, so here we are), spent time with my husband before he left for his week’s travels, spent time talking final wedding plans for my baby sister’s big day next Sunday, and even saw a friend. It was a busy, productive day, but it wasn’t my typical Labor Day. Truth be told, I haven’t had a typical Labor day in several years.
You see, for me and for my family, Labor Day has only ever been about two things: a cookout and having our eyes glued to the annual Jerry Lewis MDA Telethon.
Do you remember watching that? I certainly do.
As at least some of you probably know, the Jerry Lewis MDA Labor Day Telethon was a 21-hour telethon that contained hours of top-notch entertainment as they raised millions of dollars over the years for the Muscular Dystrophy Association. Fact: even though Charcot-Marie-Tooth disease (aka what I have) is a nerve disease and not technically Muscular Dystrophy, the MDA supported CMT under the MDA’s umbrella. Throughout the course of my childhood, I was personally impacted by the work of the MDA in the form of years of visits to the MDA clinic downtown and several memorable summers spent at MDA camp, which is a free camp for MDA patients.
It’s an incredible experience that allows kids that have many various levels of disability (we’re talking from kids more mobile to me to others that are wheelchair bound and have machines that help them breathe) to have a week away from family, surrounded by others just like them and an amazing crew and staff that make every single camper feel special, loved, and NORMAL. Camp was always an incredible experience for me, and I was always so sad to leave. Even now, years later, I have a few young teenagers that follow me on Instagram that also have CMT, and they messaged me telling me about how excited they were for camp, and also followed up when they got home saying it was an amazing time. It makes my heart so happy to know that this camp is still making such a huge impact on kids lives, even after the telethon got canceled.
Yes, you read that right. They canceled the telethon. The MDA telethon started way back in 1966. Actually, Jerry Lewis started hosting telethons to benefit the MDA back in 1952, but it wasn’t until 1966 that the telethon I grew up loving and appreciating came into being. The 21-hour telethon began the night before Labor Day, ran all night long, and until 6 or 7 pm on Labor day, and it was such a joy to watch. Broadway shows, famous singers, and celebrities from all different genres graced the TV screen as they performed, entertained, and help bring in millions of dollars worth of donations. It was a joy to watch, not just because it was raising money for a good cause, but I was one of Jerry’s kids. My family was one of the families impacted by this show. Fun fact: one year I was actually on a local segment of the telethon, as I got interviewed on camera one of my summers at camp.
When Jerry Lewis was no longer a part of the telethon in 2011, it was so sad to me, as he spent most of his life supporting the MDA. The show began to change. They made it shorter, and it felt a lot less magical than in years past. 2014 was the last year of anything resembling the telethon, and my Labor Days have been boring and a little sad ever since.
It’s funny how something as seemingly small as an annual television broadcast could make up so many of my Labor Day memories, but it does! As I was writing this, I actually asked my mom if they only started watching the telethon after our family was diagnosed with CMT or if they watched it before. It turns out my family always watched the show, even before I was in the picture, and it just got more meaningful once we learned we were linked to it. How cool is that?
Why such a long post about something that doesn’t even exist anymore? Well, for one, I promised to publish something every day this month, and this happened to be on my mind this evening, but more importantly, I want this blogging challenge to help you get to know me better. In case you haven’t figured it out by now, having CMT plays a big part in the woman I grew up to be and on Labor Day, we always focused on this show, this cause, and the amazing things it did for patients all over that were just like me and my family. The show might not be on anymore, but the memories of watching it at my grandparent’s house in between rounds of swimming in the pool, at home, and even in my college dorm room, as Labor Day weekend was also move-in weekend, are all very strong in my mind and in my heart.
Do you have any Labor Day traditions or favorite Labor Day memories? I’m also dying to know: Did you ever watch the MDA telethon? Let me know!