Have we met? I’m easy to remember. My favorite word is no.
I don’t know when I became that guy. I’m pretty sure I hate that guy. So how did I become him?
That’s rhetorical I suppose. I know how it happened. I have a little “Noid” on my shoulder. Remember the Noid character from the Domino’s commercial?Mine sits on my shoulder, not unlike the shoulder of everyone with a chronic illness. This particular Noid gives little to no shits about the timing of your pizza delivery, he only cares about your energy level and ability to live a normal life. His biggest role consists of listening in on your life to see what invitations and opportunities arise and as you are considering attending he leans in and whispers in your ear. “Nooooo.”
I vowed to never listen to that Noid. I was different than others with Chronic Illness. I was more optimistic, more determined, stronger than others and I would continue to thrive. It is becoming more apparent daily that it is an illusion, I’m no different than the rest. At least not anymore. Now, my Chronic illness has the ultimate and final say in what I commit to.
It’s not that I don’t want to go out and do things. In fact, sometimes when I get an invite I mentally envision myself there, doing it, rocking it even. Then I remind myself of the harsh truth that only those with a Chronic Illness will understand.
“Yes, I feel ok now but how will I feel then?” That is the big question. And, while I can only speak for myself, it leads to a lot of no’s.
The Noid looms in the shadows. He doesn’t hide, his presence is known. For the longest time I knew that I had his location narrowed down, confident that he would stay where he was, that he wasn’t coming for me.
It happened real fast. I went from bouncing out of my chair after dialysis. I got up early and went to bed late. I was working out. People invariably were surprised when they learned I was sick. I was fooling everyone. Even myself. Then I started showing it. My walk went from a confident gait to a slow but determined straight line. I was slow to get up. My legs were constantly cramping. My complexion paled. I knew it was happening but I was powerless to carry on the charade. People began to ask me in earnest if I was ok.
When I said I was fine…those who knew me didn’t believe it. I still refused to open up about it because I just don’t do that. They grew frustrated with me. They don’t get it, it’s not their journey it’s mine. It’s not their story to tell, it’s mine. I will tell it again but right now I’m too tired.
Always the introspective one I have looked hard at my current mindset. It’s not that I’m unable to do things, I just don’t want to. Anything outside of my recliner is no longer my comfort zone. I know how far the fall is from upright into my chair, outside the house I can’t measure or prepare for the fall. It’s happened too many times lately; I’m out and all of a sudden I just hit a wall and sometimes that wall hurts more than it’s worth.
I’ll get back on that figurative horse someday. I always bounce back. At least I always have before. I can hope. But until that time, I am taking off the Superman shirt and replacing it with a simple black T shirt with a giant N on the chest.
For I am now the man who says NO.