I’m so glad didn’t write to all of you last week. Trust me, this one is way cheerier than what you would have seen.
I had two episodes of not getting enough oxygen which put me into the gasping for air abyss and thinking that I can’t imagine an uglier more painful way to die. As soon as your body realizes it’s not getting enough air to breathe, the body and hence the human caught kicking and screaming within that body, are in automatic Panic Mode. Under W.’s color-coded terrorism warning system, this would be Code Red. Everything seems to be hooked just perfectly. What the fuck is going on?!?
The first was an oxygen line squished in a doorway. This scared the crap out of me. A mere crimp can send me into a paroxysm of hysteria. Then on Friday in the bathroom…(why do these things always take place in the bathroom? Because, you silly thing, we (the gods) are in a festive mood: let’s make the situation as miserable and as embarrassing as possible…isn't that fun?) I’m sitting and I cannot catch my breath. I cough. Over and over and over again. (The kind that used to break ribs until my Pecs of Persuasion developed sufficiently to allow the bit of lung that I’ve got to remain functioning. Now they just do evil things to my back muscles. I can handle those, piece of cake. Ha!) Chip hears the commotion and checks to see if the air is going through all the tubes on my tether. So what the fuck is going on???
He jiggles the bottle of water into which my oxygen passes before getting to me. Without this little step, I’ll dry like a raisin.
Suddenly, I’m getting air. Who, beyond Chip, will think of doing this? I need not only a babysitter, but a handy babysitter at all times. No joke. I’m off in Panic Land, so I’m entirely useless. I guess whoever’s here calls 911. What other option is there?
These frightening episodes exact a toll. There’s always some of “I don’t want to live anymore’s.” But it’s what happens to me every day that makes living such an unpleasant thing to do. I’m petrified of walking and exercising—the two things I must do if there ever is treatment for this terrible disease. For it is terrible. Being a shut-in is terrible.
My fears are sometimes insurmountable. Those are my “days off.” When Franny is on overload. But a constant these days is not wanting to eat. (The really slow and painful way to die…starve yourself. Big move Lipman.) True, that I’ve lost muscle mass is to be expected, but I’ve lost nine pounds since, unlike Humpty Dumpty, I put myself back together again. I ate last night. Not a lot but enough.
Mom and Doug were over. I couldn’t handle it. I couldn’t speak. I couldn’t take part in any conversation. I went to bed mid-evening. The night before, in a fit I had while only Chip was around to watch. I threw soft objects in the living room.
I really wanted to break every breakable I could. This took incredible self-control on my part. Chip said “What do you what?” (Attention, for one.) Me: “I want nothing! I’m nothing!” Bless that man, he put me in a bear hug. (Everyone should have a Chip. Trust me, you won’t be disappointed. You can’t have mine. I found him first.
I do find it hard to be part of this world. Especially as I’m not a participant. I imagine you might say I’m more of a participant with this blog than I was when I was alive. Interesting thought.
Oh, I realized I had read Catch-22 recently when I reached the last page.
One more thing. I finished the Springbok “Indian Princess” doll from the kit my mother bought for us to make together way back in 1970. She’s 16 ½ inches tall. She looks lovely. I’m now sewing the body for “Katrina,” the little Dutch girl. This is the second kit my mother bought. It broke my heart thinking she might not be here to see them (Or hell, I might go before they’re done.). Like an idiot, I found two more on Ebay which I promptly bought. Asshole.