Forgive me as I take a deep dive for a moment. You see over time we continue to lose pALS, most we don’t personally know other than through social media. Either way it is painful. ALS is just so relentless I detest it. These are good people they, no one, deserves this.
Everyday I read a post on one forum or another …
“My pALS passed away”
“My pALS got their wings today/last night etc.”
This alone brings to life to the statement “every 90 min someone is diagnosed or passes away from ALS”. This just sucks!
Since being diagnosed I have lost track of how many of the notifications I have seen. It, in essence, reminds me of my own mortality. I wont lie it scares the shit out of me but I cant just cower away I wont.
I am not the only one going through this, this scenario is playing out around the nation and the world. ALS to me and many others is not rare, its just not the “cause-celeb” that other conditions are.
Everyday there is a cacophony of voices in my head…
“Why me? Why now? What’s next?
Who’s next? What will my family do? Will they find a treatment or a cure? Come on hands, move. Legs don’t fail me. Im so tired. I hate being taken care of. I’m blessed to have help. I cant do anything. I can still do some things.”
There’s allot of internal dialogue, there’s allot of time for it, sadly. Some days the conversations are cordial others not so much.
No one deserves to live with ALS. Many do so with outward grace and strength. We also know there is an equally dark side to living while dying.
There are so many working to erase ALS, I am grateful, this alone gives me hope. However my family and friends fill me with life.
Thanks for letting me vent.
The Juan but not the only