When all this first happened and for the entire 5 months, friends leaped to my assistance. I had more visitors than I knew what to do with. 🙂 I felt loved. Now that things are going back to my version of normal with Lupus, I fear being left and yet I know the fear is unfounded. My friends love me and I know it, and I know that they were there for me before all this happened. But there's this fear that all the love and attention is going to stop, and I'll fade right into the background and be forgotten. I like the feeling of being loved. It's not entirely new but its new enough that with a taste of it I don't want to let it go. ...continue reading "Don’t Forget Me"
Monday was one of the hardest days I've had in a while. It started off with nightmares that stayed with me for much of the day. I tried to go back to bed to start over but had yet another nightmare. Then as planned, I got myself together, got on my horse (wheelchair) and left the house despite mega pain. I went to the shoe store and cried my eyes out in the store unexpectedly. I had no idea the grief would hit me right there in DSW but it did and there I sat crying in my chair in front of people. I felt like a fool.
Later I went to the post office to send out art only to discover that it was Columbus Day, no mail. That would have been fine except I was already at my max of stress and physical pain. Then later the big worry happened, I fell. ...continue reading "Surviving to Eke out Gratitude"
In my therapy session today we talked about the dream I had just before he called. In the dream I was 47 but in the 2nd grade. I sat as an adult in South Korea with second grade children in class. The teacher taught evolution but one student spoke up to the teacher and class about why Jehovah's Witnesses believe in Creation. I offered a few supporting comments but it was hard to concentrate because the stereotypical shoes they gave me to wear were a podiatry nightmare. You could tell the American students from others because we were hopping like bunnies in the shoes. (hey don't judge lol lol it was just a dream. lol)
In a different dream I was sleeping next to my mother in bed as an adult. The bed was out in the open, in the middle of a town fair. There was a band, baton girls, food stalls and of course football because this is after all the Midwest. So we were sleeping on her stripped bed, nothing but a mattress. It was the same mattress from my childhood that she abused my family on. So she and I slept. My back was to her when she put her arm around me in a very loving, motherly way. I wanted it to be safe and allowed it. Finally I relaxed enough to feel a mother-daughter connection with her. It felt good. Then she realized she was cold because I hogged all the covers. ...continue reading "Therapy Review : Love Me"
I asked you to do the surgery. You said you could or a colleague but I trusted my life in your hands. It felt like there was so much at stake, more to lose than body parts. I can't explain how afraid I was that I'd throw a blood clot or bleed to death. I was so scared I kept calling to my mother!
I had a dream about her last night. She was a helpless infant in my arms. I rolled around in my wheelchair with her head on my shoulder. I made sure she was safe and warm. Safe. ...continue reading "Not Cut and Dry"
I'm not brave. I'm not. I'm not rolling with the punches, I'm just getting punched. As I said, I've walked through the fire and I'm all burned up. I'm skinny, starving for a moment of real rest, of relief. ...continue reading "The Brave Face"
Today Dr. D and I discussed saying "no" to my mother and the consequences of doing so. My teeth began to chatter. I was rocking back and forth. I had to get a hold of myself.
Last night I was in the bedroom and instinctively turned to verify she wasn't in the doorway but for just a second I saw her. Obviously it was my head playing games, but for a second I thought I saw her standing there, which is why I turned to look. I had a scarf hanging over the door which created a figure in my peripheral vision. Turning to look isn't new. I have to force myself to not look at the door. I have to tell myself there's no way she's in the house, stop worrying, remember I'm safe now. But that's not enough, I have to look at the bedroom door to ease my mind. ...continue reading "Therapy Review: Control. Gaining confidence."
My Face My Art - The invisible illness becomes visible.
It's as clear as the art on my face.
The three art pieces used in this addition of "My Face My Art" are: (drum roll please) ...continue reading "Hope and Art"
I'm still awake. I was saying a prayer before bed where I talked to God about how hard it is to say I love you even to him. I have a hard time hearing others say, "I love you." Most of the time terms of endearment irritate the snot out of me. Hun, sweetie, yuck! "I love you" will make me recoil with mistrust.
My mother told me if I didn't change my ways I'd end up like my Aunty S and die alone and unlovable. How dare she? I was told early on that I was killing her love for me. I was killing my mother's ability to love me. When younger, my sister would catch me as I walked around the corner, hit me in the stomach and say, "love hurts." She tried to tell me in better ways but it ended up being awkward. "I'd tell you I love you but you'd just do something to make me regret it." At the time I couldn't hear past the words.
Here I am at 5:53 in the morning, hours after saying a prayer, and I'm still awake because of how three words feel on my ears. To hear someone say those three words feels like a shackle has just been put on me. ...continue reading "A hard time with the words “I love you”"
I didn't know that grief would be accompanied by desperation to fill empty spaces. I used to require silence. It helped keep me calm so as not to be overwhelmed by stimuli. I now need to hear some type of program, film, theater, something. I need background noise to break the silence. Now, in silence, my head goes on and on. I go over all my mistakes and failings. I think and think some more.
It's not just that I need noise in the background to break the stream of thoughts, there's a specific noise I need. I need to hear a male voice more than a female voice. My anxiety remains sky-high and my attention span is short so I do well with 45 min TV shows and such. Two hour films feel like a commitment. Most of the time I don't sit and watch the show, I'm up tinkering with this and that, cleaning, pacing.
I didn't realize how much blame is added to his death. It's humorous that his grandmother (not my mother) feels no guilt for the cruelty she slapped him with before he died. She's smoothed it over in her head. Nope. You can't cover that up. It was profoundly immoral. ...continue reading "Grief: Didn’t you know this would break us? 1"