Updated: Mar 16
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 connecting. Connecting with myself, connecting with the disease that took my dad, connecting with and understanding 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 that within ALS I have found a way to reconnect with myself. A passion I never knew was burning inside of me just waiting for get out to help others because I was PUT in a situation.
The ALS community is like a club that no-one asked to join. We didn't fill out registration forms, pick out a nice new outfit to wear to our first meeting, we one day were told that we were now a part of a club that consisted of heartache. I didn't ask to be apart 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 it has been remarkable to see how many other people were apart of this club. The ones who said they had to reach out because they too knew the pain of ALS. My heart always instantly aches for them, as they too know the pain. They know how scary it is to be told a loved one has a disease that is terminal, to be told there is no cure, to be told they will basically be robbed of all their dignity.
The second thing that always comes to mind though is that I'm glad I reached out. I'm glad I pressed send, I'm glad 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 is why I want to continue to share, continue to educate, continue to 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 behind the science of ALS and while the teacher nerd in me has loved the learning aspect, the note taking, the underlining and highlighting, I cannot help but to get completely frustrated when I am done. Majority of the time ALS spins a little spinner and decides randomly who it wants to grab, the best of the best that it wants to land on.
I think of all the miles Ton would walk around the neighborhood, the size of his biceps, the way he could talk for hours to anyone about literally nothing at all, 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. He had pain he couldn't explain, slurred words that made him sound a 6 pack of beer in midafternoon and felt completely lost with doctor after doctor telling him nothing was wrong.
I have a page full of notes worth of tests and diseases that need to be ruled out for ALS to even be considered as an idea by some doctors and even then 40% of people are told they have something else first and 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 basically a year or more into symptoms, you are an individual are already mentally and physically struggling and that is not okay.
Ton was the biggest 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 advice you never knew you needed because it was also advice you very rarely would actually 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 biggest pain in my butt because he cared, he loved, he wanted the best for everyone around him and if I can do anything in life like him I hope I can care 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 that I will fight for, all while being the biggest 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 too.