Saturday, December 10, 2011
Aaaaarhg. I’d love to let out a good long scream. Maybe that would help in some way.
I’ve had a million narratives in my mind this morning with my two cups of coffee. I really must go back to my half-decaf blend. I think too much. (However, it is nice to be a brilliant poet in those moments!)
It’s been a tough week. I have just hit overload of emotions. I feel like I can handle any one major obstacle at any given time, but that is not my current challenge. I have business, home, and health all vying for attention. I throw expectations and goals out in front of me to follow. If I don’t reach what I shoot for I feel like I let myself down. I know all too well that I have to put the oxygen mask on me first in order to take care of anyone or anything else, and I’d like to believe I do. Maybe I don’t. It was too much to call for a massage appointment yesterday.
That’s the problem. My health is changing. I wish I could get angry I said to my friend Gina the other day. You’d be proud of me… I am getting mad. But to what end? To make me scream? OK. I’ve screamed. Now what? “Acceptance” I’ve been reading on the SCDS support Facebook page. Illness changes how we operate in the world. Limitations. The conversations of disability, of how no one gets it, of the weird changing symptoms. At times it is very laughable. Mostly it is painful and frustrating. Even scary. Who else could know how noisy our bodies are inside better than my new BFFs on Facebook? Or that the sound of laughter or the voice on a telephone can cause instant nausea or a head spinning session? How surreal my own voice sounds, kazoo-like and scratchy, often too loud for even me. Ah, here I am in the club nobody wants to join. Like widowhood, or child loss, or divorce, or cancer. Yet, thank goodness we can find someone who goes before us on these strange journeys. Whew. I am not alone.
I have to schedule a nap every day. Even twice on some days that I get up and get busy early in the day. This is the only coping mechanism that works against the conflict of my inner ears, vision and brain. It eases the headache of too much incoming information. It lets me reset the button for getting through life, and the rest of the day. Ironically we tell people to come over mid-day to visit. It’s Dave’s best time. I am learning that if visitations interfere with my rest period I pay the price. Then Dave will pay in turn, because of the way I feel. We have to reset this button, too. There are adjustments along the continuum of illness. Keep the oxygen flowing – literally for Dave; figuratively for me.
I resent the time and energy “the hole in my head” (it really is descriptive and becoming an endearing term to me) demands. I hate that I have to read and write, then re-read and write several times over to make sure I get each passage right. I take notes on notes to keep it straight. I can’t understand why one day is good and the next is not. One day I can exercise the next I don’t have the stamina. Living is a very conscious effort. No autopilot allowed.
Yet, I am still very fortunate. I know it. I have healthcare. I have supporting friends and family. I have answers. I have the strength to say yes and no. I have fewer symptoms and problems than others with SCDS. I have work. I have the choice to take a nap. I have a few more moments with Dave. But I am still PO’ed.
I read about new research on brain and memory lapses. Apparently, when we literally walk through the doorway to go to another room we hit an “event boundary” of our compartmentalized minds. So “what am I doing here?” once you’ve gone into another room can now be explained. It doesn’t happen within the same room. You must walk through the doorway. Isn’t that comforting!
This morning, after an hour of brain babble and narratives and pre-writing, I brought Dave his glass of breakfast Ensure. He was already sitting on the edge of the bed, in the dark, waking up. I turned on the bathroom light to create the false dawning of the day minutes before the sunlight would enter the room. He holds his head in his hand more than he knows. His silhouette is reminiscent of The Thinker, only with the body of aged man, fragile and tired from years of intellectual discourse. He is in his thinking posture. He is so thin, I always see. I make a mental assessment; his foot is swollen again.
“Here’s your juice,” I said. Last night I realized the smell of chocolate Ensure is becoming very unpalatable to me. Another round of pills; this must be a new day.
I sat in the rocking chair facing the bed. A notable calmness came over me. I had crossed the threshold into our bedroom of Dave’s world. I felt a disappearance of the angst and worries and pacing I was doing moments before, one floor below. I shed my cloak of self at the doorway. I remembered the same feeling I have when stepping into the lives of others as a hospice volunteer. It is a privilege to be in the moment. To be with someone who is still living, although I see him as dying. I am outside myself.
I can only be in the moment. It is how I have to cope right now. Sometimes only five minutes at a time. Five minutes of work. Five minutes of rest. Five minutes of feeling good. What can get done will be.
My health is changing. My life is changing. For just today I am.