Beat Down ALS:
Music, Mayhem and Making a Difference
Friday, April 1st, 2016 was one of the most incredible and fulfilling nights of my life. My sister, Catherine (whom I call Kitty), and I, with the help of Affinity Affairs (a very talented up-and-coming event planning company) put together our second benefit concert to help raise money for ALS research. With the musical talent of Harumph, Helen Kelter Skelter and My So-Called Band, plus the help of so many volunteers, sponsors and donors, the evening could not have been more perfect!
For those of you who don’t know, ALS, or Amyotrophic Lateral Sclerosis, is a progressive neurodegenerative disease that affects the body’s voluntary muscles. The brain sends neurons from the spinal cord on to the rest of the body. However, due to the degeneration of these motor neurons, they essentially die en route to their destination, never completing the brain’s directions to pick up a pencil, lift your foot to go upstairs or raise a fork to your mouth. This lack of movement causes the muscles to atrophy, and over time, can cause total paralysis. Imagine being completely paralyzed yet you can feel everything and your mind remains perfectly intact. That is the life of someone diagnosed with ALS.*
Back in 2011, I was hanging out at a friend’s house late one Friday night when I received a text message from my mom asking if I was able to come to dinner on Sunday. It had been a long-standing tradition that my parents would cook dinner for my sister, brother and me on Sundays and we were always encouraged to invite others. Anyone was welcome - significant others, roommates, besties – everyone. I think it was their way of making sure we were getting at least one hearty and nutritious meal throughout the week.
Can you do dinner on Sunday?
Just the family this week.
I read the message and sat quietly. The guy I was seeing at the time looked over at me. He saw me staring at my phone and asked me if I was ok. No. Something isn’t right.
My dad had made several doctors’ appointments over the previous weeks after he noticed his speech was beginning to slur and that water would spill over the corners of his mouth when he would take a sip. These were the details shared with me after that Sunday night when just the family came over for dinner.
We walked into the house and the air was heavy. My mom and dad both sat waiting for us on the couch. After we sat down, my dad didn’t hesitate. “Girls,” he said. “Have you ever heard of Lou Gehrig’s disease?” I recognized only the name of the famous ball player but never knew of the disease so unfortunately nicknamed after him. That uncertain feeling I’d felt since Friday night was intensifying and, immediately, I started to cry. Something isn’t right. When my dad mirrored my reaction, I knew what he was about to tell us. Throughout my entire life, I had only seen my dad cry once, and even then, it was more tearing up than crying. Yet, here he was, with tears falling down his face, my dad was crying in front of us.
And that was that. A moment in life I will never forget because it was a moment that my life changed forever. That Sunday night back in 2011 was the night that my dad shared his diagnosis with us, the night that he told us he was going to die. My father who never smoked, who ran marathons, who was as smart and as sharp as they come, who (aside from the weekly Reese’s cup binge) ate healthy his entire life – was going to die.
I was in shock for a long time. After that night, I didn’t react or truly allow myself to be affected for the better part of a year. But as time went on, and as the disease progressed, its symptoms became too hard to ignore. I was finally forced to come to terms with what was happening. Watching my dad go through this season of his life felt like torture. I couldn't even begin to imagine what he was feeling.
Over the months after learning of his diagnosis, Kitty and I would spend as much time with our family and help where we could but we wanted –we needed- to do more. My mom was spending her days and nights as his fulltime caretaker. My grandmother flew in from Memphis and stayed at our house for almost a year to assist. My brother, a medical student at the time, was helping to bathe, feed and lift my dad when my mom and grandmother couldn’t.
That is when the discussion of a benefit concert began to take shape. I have to give so much credit to Kitty. We had talked about this idea for a while, all with the purest intention of putting it into action, but it wasn’t until the day that she came home and said, “Ok, the band is in and it’s happening.”
So in 2012, we began to plan our first event and it was a wonderful success. We had no idea what to expect, but we set a goal and met it. We doubled it, in fact, donating over $6,000 to the ALS Association and the Muscular Dystrophy Association. Then, late last year we began discussing the idea of yet another benefit concert with the hope that we could make it even bigger. Our first Party Planning Committee meeting (aka the #PPC) took place in January of this year and from that moment, the Affinity Affairs ladies, my sister and I didn’t stop.
On April 1st, 2016, we were so amazed to see a packed Brewhouse before the first band even began their set. Doors were advertised to open at 8:00 with the first band beginning at 9:00, but at 7:00, people began to show up. We exceeded our $10,000 goal, raising over $13,000 and are still receiving donations! The most heartwarming part of the evening was seeing the smile that never left my mom’s face. She was so proud and honored to see everyone there. It was a night she will never forget.
I feel the same way. It was a night I will never forget. Anytime my sister and I talk about the event, the first word that comes to mind almost immediately is “overwhelmed.” So many times throughout the course of planning the event, we would have to take a second to stop what we were doing, breathe, cry, and then get back to the task at hand. We were just so overwhelmed (there is that word again) with gratitude by the generosity that was shown. From the company sponsorships, to the raffle donations (that totaled over $7,000), to the incredible bands that played for free, to the volunteers that helped set up at 9:00 am and tear down at 4:00 am the next morning, to the people that shared our event all over Facebook and followed us on Instagram, to those in California, Texas, Tennessee, Colorado and farther that donated to our GoFundMe page. Everyone. Everything. All of it. Overwhelmed. Because of the help from, truly, hundreds of people we were able to have the most worthwhile and successful evening. Words can’t express. And even now, as I type this, my eyes fill with tears thinking about all that was accomplished. We did such a good thing. This town did such a good thing and I just can’t get over it. Overwhelmed.
I know I speak for my family when I say thank you for letting us share our story with you. Thank you for continuing to amaze and astonish and give whole-heartedly. Thank you for being there to honor the #ManoftheAur. Thank you for supporting others whose lives have been affected in one way or another by ALS. Thank you for your time, your support, your donations, your love. Thank you so much for everything.
*Please visit www.alsa.org for more information and ways to get involved.