How many of us want the destinies given to us? How many of us even know what that is? We think we might know (It’s our destiny to be together/alone/this career, etc.) but do we really? I’m not sure we ever find out because it changes, just like everything else.

And how many of us want everything we have? I don’t mean having everything we want…..few of us do, and even those who think they have everything they want in a particular moment seldom sustain that feeling. Because there is always more, always something new around each and every corner that we think we can’t live without. Mostly, we still live.

But wanting everything we have….that’s the challenge. Personally, I can tell you right off the bat that I don’t want NF (my disorder). And I certainly don’t want everything that goes along with it; agonizing pain, dysfunctional digestive system, inoperable tumors, isolation due to the pain…..and on and on and on. The things I actually want are few: My friends, family, books, music, etc. The rest, you can have.

And that might be the biggest mistake anyone can make... Throwing away that which feels profoundly inconvenient, hurtful, useless and empty-feeling (so we think). But the painful (no pun intended) truth is, my body doesn’t really know what is useless to me and I’m not sure my soul does either. I haven’t a clue what I am supposed to be learning, but I’m learning something, that’s for sure. Kindness, patience, understanding, empathy….these are all things I strive for not in spite of my condition but because of it. And I fall short 90% of the time. So I pick myself up, dust myself off and try again the next time whatever challenge presents itself. I can hear the little voice whispering in my ear reminding me, but I often yell over it. Make no mistake, it’s the quiet voice you should be listening to (unless it’s telling you something bad, but that’s another story).

We can’t know much of anything when it comes to being here, living this life and seeing all the misery around us. The good too, but it seems to me that as I age, the good things became more rare. And I don’t mean because of illness and personal challenges. I mean in general. Perhaps it was always this way and the digital age just made it that more apparent. We instantly know what happens halfway across the planet. Once again, I’ve weaned myself off the news because it’s just too depressing to read and increases my pain dramatically.

As my need for more help grows, the letting go of control becomes crucial to surviving the lifestyle change. Accepting that I can do less and less is beyond challenging. And the one thing that gets me through it all is acceptance.