On Friday night I had the amazing opportunity of attending the Vintage Lochmere 2019 to support Team Drea and ALS research. It was an amazing event with wonderful wine, unbelievable food and even better friends. I was honored to speak about Duane and our ALS journey.
The event was put on hold a few times during the night. Two massive storm cells came through. Golf ball sized hail, gale winds and torrential rains. It was bad. The event continued and everyone had a great time.
All I could do was laugh. Laugh at the situation. As the first cell hit Duane’s photo fell and shattered. That was the final sign I needed to move forward.
Duane always said to me, “ALS is NOT your cause. You don’t need to deal with ALS for the rest of your life. Don’t search for a cure, there will be no cure in your lifetime. But it is your job to help people. You need too help them. But remember ALS is not your cause”.
I have struggled with this for a year and a half. What am I supposed to do? What did he mean? How do I separate the two? How do I help people and not deal with ALS? In my mind there is no difference.
This weekend I realized what he meant. I need to help people. Answer questions, help care for them, teach them and support them. BUT I can no longer be immersed in the ALS world. It hurts my heart. There is no cure. Every week I see someone I “know” die. I have great, wonderful friends with ALS and I will continue to be their friends and support them but I need to take a step back a bit. It’s time.
I have learned so much in the last five years and I will continue to share and help but ALS can no longer control my life! I feel the weight off my shoulders.
Thank you Duane.
– xoxo Victoria