I've made a lot of goals for myself for 2021, and none of them are the typical Pinterest-worthy goals. This year, my main goal is to connect with myself, connect with the disease that took my dad, understand nonprofits, and how to help others connect.
This is the year of connecting with myself as in Sabrina, the individual, not Sabrina, the mom, the daughter, the wife but just Sabrina. It is crazy to think I have found a way to reconnect with myself within ALS. A passion I never knew was burning inside of me, just waiting to get out to help others because I was PUT in a situation.
The ALS community is like a club no one has asked to join. We didn't fill out registration forms or pick out a nice new outfit to wear to our first meeting; one day was told that we were now a part of a club that consisted of heartache. I didn't ask to be a part of this club, but I am here, and I might as well make the best of it, right? As I have been reaching out to companies and individuals and sharing Ton's story, seeing how many other people were a part of this club has been remarkable. They said they had to reach out because they knew ALS's pain. My heart always instantly aches for them as they, too, see the pain. They know how scary it is to be told a loved one has a terminal disease, said there is no cure, and said they would be robbed of all their dignity.
The second thing that always comes to mind is that I'm glad I reached out. I'm so happy I pressed send; I'm so excited I shared my story because maybe for just one moment while they were reading my letter, they did not feel alone and that someone else knew how life once was for them. Reasons like that are why I want to continue to share, educate, and make those aware that they are not and will never be alone in this club.
I've been reading books, watching and reading Webinars, and learning more about the science of ALS. While the teacher nerd in me has loved the learning aspect, the note-taking, the underlining, and highlighting, I cannot help but get completely frustrated when I am done. Most of the time, ALS spins a tiny spinner and randomly decides who it wants to grab.
I think of all the miles Ton would walk around the neighborhood, the size of his biceps, and the way he could talk for hours to anyone about literally nothing. He seemed to do everything the right way. One day the ALS spinner stopped on him, and for a while, before he was diagnosed, he felt crazy for a time. He had pain he couldn't explain, slurred words that made him sound like a six-pack of beer in midafternoon, and he felt utterly lost with doctor after doctor telling him nothing was wrong.
I have a page full of notes worth tests and diseases that need to be ruled out for ALS even to be considered an idea by some doctors, and even then, 40% of people are told they have something else first. A second opinion will later come back with an ALS diagnosis. How frustrating! How mind-blowing! By the time you are officially diagnosed, you are a year or more into symptoms; you are an individual who is already mentally and physically struggling, and that is not okay.
Ton was the most significant pain in my butt. Everything was on his time, done his way, and would cost a million dollars. Ton was someone who you could argue with, someone you could laugh with, and someone you could cry with, and in any aspect of life, he'd give you the advice you never knew you needed because it was also advice you very rarely would consider taking. Ton was someone who would be in your corner every step of the way, even if what you were aggravated about was an unassigned parking spot that you just really liked to park in (not that I knew this personally or anything...). Ton was the most significant pain in my butt because he cared, loved, and wanted the best for everyone around him, and if I can do anything in life like him, I hope I can manage as strongly as he did.
To those in the ALS community, you are my new Ton. You are the family, the friends, and the people I will fight for, all while being the most significant pain in your butt too!
My ALS Advocacy journey is just starting, but I know this is a mission I am forever on, and I'm glad you are here with me to see where this goes.