Who is that person who has taught me to see things in exquisite detail, to dream, to plan, and more than anything else, to be OK with who I am right now? For this ever so fortunate spoonie, that is my partner, my best friend, my fellow spoonie, Superhubs. He challenges me, reminds that we can not “let the bastard win” (the bastard being the disease). And sometimes, he let’s me rage, let’s me cry and reminds me that those feelings are OK too.
Most days I’m OK with my situation. I’m chronically ill but not deathly so, I live in beautiful areas, travel a lot, have the love of my life across from me and life is good. Even on a good day, there can be moments, you know those moments, when you’ve dropped the same spoon for the third time. Those moments when you open the freezer door and BLAM a 3 pound pot roast hits your toe. For me today it was not the first spill of the morning, or the second, or even the cup that leapt out of my hand of it’s own volition. It was the eighth mishap in a 20 minute time span. Little things to be sure but add them all up, and next thing you know, tears of frustration well up behind the eyes and a barely contained sob clogs the throat.
I know that whining and complaining about incapacities, pain, or aggravating nuisances does no good. It doesn’t clean up the spill, doesn’t solve the problem, doesn’t even make me feel any better. What it does do is give me eyeballs that feel like boiled onions. When I had this conversation with Superhubs today, his answer was simply, “I understand. Better than most people. I’m here for you.” So if you’re a spoonie, or the partner/sibling/parent/friend of a spoonie, please, once in a while, don’t remind us of how lucky we are that it’s not cancer, don’t remind us of all we have to be grateful for, just try to understand and tell us that you’re here for us. And when those tears fall, know that they are just our “rage at the dying of the light,” our grief for the lives we’ve lost and the lives that will never be because we’re weary warriors and tomorrow’s battle still awaits.
Til next time ~May the spoons be ever in your favor ~JPP