Although decidedly an introvert, I am sooo not zen. Not. Zen. At. All. At least it certainly isn't just my nature. It fact, it may be the antithesis of just my nature which is quiet, a tad on the perfectionist side, opinionated, feisty, and mostly stubborn. Sometimes I think the "quiet" and "stubborn" parts of me are what's going to get me through this alive, so to speak. Meaning spirit intact. It's taken four years but it's finally starting to dawn on me I have no control over my body whatsoever.
Who took human biology? Hands, please? Anyone see the amazing "Human Bodies" exhibit? I did both. Yes to biology, and yes to the exhibit (which was far superior, btw ... sorry, Hope College.) As I lay here quasi flat on my back in bed for the third day in a row I've been entertaining myself with thoughts of Roseanne Roseannadanna. Recounting skits to Larry, as he alternately snores at the other end of the bed and shares the pillow with me. Who knew cats could be therapy animals? The irony that Gilda Radner died of cancer, is not lost on me as we PWCs are usually taken out young by cancer or heart disease. Or suicide. Why? Yeah. Back to Roseanne.
Do it with me now. Widen your eyes, look indignant and say, "If it's not one thing it's another." Now scrunch your eyes and hold your thumb and forefinger close together ... you know that little teeny tiny gland in the center of your brain? Yeah. In the center. (Now point down straight into the center of your scalp.) Yeah. THERE. Waaay down in the middle, sort of like in the center of the earth is a teeny tiny gland called the hypothalamus. It's the size of a pearl. A PEARL. Small enough to hide w/in the shell of a mollusk (I love that word.) Yes. Smaller than your baby toenail. THERE. Mine is broken. Smashed beyond all recognition. Switchboard malfunction. Meltdown status. Yup. My body can no longer regulate its "stuff." You know ... heart rate, BP, body temperature, hormone production. Little things like that from that little gem of a gland.
This makes life fairly erratic. Really. I mean when the BP tanks to 80/40 and the heart rate soars to compensate, one sits down ... if one hasn't already passed out. Kind of takes the spontaneity right out of life. Or not, depending on one's vantage point. There are two ways of looking at life: take it or leave it. And truth be told, a lot of those with ME/CFS choose to leave. Me? I'm staying as long as I've got a choice in the matter. Which leaves me with another choice. Do I live in a state of perpetual panic? Or not. Is there another choice? REALLY?
Well ... turns out there is. Having spent the past four years of disabled life trying to regain some control I'd have to say I think it's as good as it's gonna get in those terms. I've been granted SSD, have a pittance of LTD and am able to fake a "lifestyle," so to speak. Although it is certainly not what I would have chosen for myself, there are a lot of things about my life I wouldn't have chosen when I was healthy! But I didn't have control over those things either. Nor could I gain it ... no matter how hard I tried (AND I TRIED!) So the issue of life, du jour, really isn't about being able bodied or not, it's about CONTROL. I have never wanted to control another person's life ... just my own. Really, my own was plenty for me. I've been able to make choices that have focused my life in one area or another ... giving it direction, but not control.
If I had been in control I would have said to my life:
"You may not put in my foster care."
"You my not put me in said adoptive home."
"Universe? You may not hurt my children. Teach them, but not hurt them." (Yes, when I was a SAHM my children WERE my life 100% of the time.)
"HUSBAND? You must stay and work on the marriage. Must. Go. To. Counseling. Together." (Yes, when I was married my husband WAS my life + the kiddos.)
"Former bosses? Ixsnay on the icromanagementmay. Really." (No, I did not want their jobs, I just wanted to do my own, thank you very much.)
"Students? Become enchanted with learning. Just try it for a day. Really. It's contagious." (Again ... my job.)
"Parents of students? Look me in the eye ... THEY are the children. YOU are the adults. Snap out of it." (Again ... my job.)
"Body. You may age, albeit gracefully, but you may not decay. You may not fail me. You MUST keep me going."
To all of the above the Universe said, "Good luck w/that." And kept spinning.
So if I surrender control do I surrender everything? Have I lost everything? Have I lost the proverbial "it?" And to whom or what am I surrendering? God? GOD!? Dude, are you like angry at me or something? Did I do something HORRIFIC prebirth that required such flagrant disrespect of my humanity? And is that really the tone I need to take w/you? I think not.
Because I know that's wrong thinking. God loves me and all the other humans scurrying to and fro. Really. REALLY. While I'm not certain He's a FAN of what's going on down here on planet Earth all the time, He's God enough to stay out of it when He should, and He does. God is a fan of Free Will.
Yes, thank you ... I'll take those reins. Even while shackled with ME/CFS. Yes, please ... I give up. I'm ready not to be angry all the time. I'm ready for peace. I'm ready not to wake up with my heart racing in fear what the day might bring. I'm ready for peace. I'm ready not to be on the verge of bursting into tears almost Every Single Moment. I'm ready for peace. I'm ready not to hide behind West Michigan's version of Christianity and expand my "God Box." I'm ready for peace. Even if that means no longer being on the verge of tears, but weeping.
For the next 30 days I'll be taking a wobbly walk on the Zen side. Breathing in and breathing out. Expanding my diaphragm. Envisioning my cells NOT containing multiple viruses. Envisioning health ... both physical and mental. Transporting myself from the confines of my bed to my almost-sort-of-maybe-next-year back yard/woods where I can close my eyes and listen to the leaves. Or not. Although climbing the dunes is currently not possible for my body, it is for my mind. Perhaps I'll start with the clay dunes of my youth on Martha's Vineyard. Then I'll scamper up some old friendly mountains in the Adirondacks and imagine life from the top of their world. Then, when I'm ready ... I'll come back "home" to MI and head for its sandy shores. One day at a time, one hour at a time, one minute, one breath.
Walk with me?