What is it really that determines if we experience being alive? What elements have to be there? What’s non- negotiable and does that change? You bet your skivies it does!
Just in the 6 weeks or so that I began taking notes on this question my own non-negotiables have changed. I was originally looking at how many activities can you loose and still feel like you are living? Then I got REALLY tired, and my breathing became more shallow. Things took longer, alot longer. I began minimizing my movements, avoiding trips out of my home, meetings were held here etc. My world is shrinking, my ability to type is slowing down…I haven’t yet gotten to 1/2 the wellness things I’d like and now fear I wouldn’t live through them~ ie. having all my amalgam fillings removed etc.
I need support breathing and am going for a pacemaker for the diaphram if I can, hopefully I won’t be too late to be effective. The thing with ALS is you don’t need something til you NEED IT. I think I’ve been lulled into a sense of complacency given the relatively slow progression of my disease. So what began as an inquiry about what it takes to feel fully alive is now quite frankly a real time look at what do I say it takes to keep me in the fight. What must life provide such that it is worth participating in…? This is a more macabre twist than I was searching for!
Now, I fully believe you bring to life what you make it, and this was meant to be an articulation of that thinking…more along the lines of “if you cant eat dinner out how can you participate and still be a part of it”, but now I don’t have the energy to care. Whoa. There I said it.
That’s a state change people. So I’m alive. Not quite satisfied with how that looks right now, but I’m alive.