I don’t particularly remember the trip from the ceiling to the floor but I remember the feeling of cold paint oozing from beneath me and covering my entire back side. Before I even opened my eyes I knew that I was lucky, there was no pain and I was alone in the room. As one eye flickered open and then the other I could see that the ceiling fan was quite dirty and in my mind I was cleaning it. That’s the way my mind works. Talk about denial. After a few seconds my entire family was standing around me, mouths open, chins on chests. Not alone anymore.
Pumpkin spice was the color I chose for that accent wall and now it accented everything from the bounce of the container that I was holding and the sploosh of the can I landed on. How festive. My couch, my lamp shades, the printer, the rugs,…orange spice.
Utterly humiliated, I took the hand of the man who was just a few seconds earlier minding his own football business and stood to my feet anticipating agony at any second. The only pain was the dripping of the paint from my hair to my favorite hippy-meditation yoga pants to my favorite sandals and the sight of the newly decorated couch in orange pumpkin splotches which now matched the curtains.
With eye rolling effort, the entire family jumped in to help clean my horrific mess and try to restore some semblance of peace to this Sunday afternoon. No one asked for an explanation. They knew that sometimes my joints don’t do what they are supposed to. They know that sometimes I give out without any notice at all. They also know that everyday I am going to keep trying and savor all those moments that my joints don’t give out, that I’m not too tired or that I have not contracted the latest infection or virus. They know I will keep climbing up ladders during my good 3 or 4 hours a day in hopes of a normal day. Sometimes I get normal and joyful, in spite of lupus.
It is bliss to be in a place where everyone ( most of the time) is mindful of my junk, I am mindful of theirs and we love each other, care for each other and we don’t have to talk about it or give explanations 20 times a day. One of my kids said to me, recently regarding my illness. ” Stop feeling guilty about being sick mom, you don’t have to give everyone an explanation of why you can’t be there or how come you gave up your post here or there or why you need a nap in the middle of their crisis. You don’t owe anyone anything. You have always been a care taker, and now you’re not. It’s just that simple. So the rest of the world can just suck it up. Its time for you to make some changes and be a caretaker for yourself.” I raised wise kids.
There are places I don’t go and people I don’t talk to anymore because of how angry they are with me for having to change. I am through giving explanations. I know its hard to understand a disease you can’t see. So what if they think I am lazy or selfish. I know it’s not that and the people who depend on me know that. So I am taking my good hours everyday to take care of my most important, my priority stuff, my mom and wife stuff. I am taking out some valuable time to laugh, make art, heal up, and do things on my 65 before 65 list. Got a roof over my head, food in my fridge, art supplies, wi-fi and my bible. My husband, my besties and my family get me, love me, and accept me. My God is doing an amazing work in me. That’s kind of all I need.
And my pumpkin Spice accent wall that went with my pillows and color scheme? I did go take that nap before everything was cleaned up. I told them I would finish it when I regenerated. But when I got up it was done and my tragic orange wall was a beautiful shade of blue, perfectly painted and gorgeous. Turns out I got outvoted. Cowboy hated that pumpkin spice paint. Well-done family. It worked out for the best. Orange makes me fall down.
All that and no one cleaned the ceiling fan… Where did he put that ladder?