Fresh-From-The-Farm

It’s so peculiar. I’m miserable, I can’t stop coughing, my life sucks, why me, wild coughing fits scare the bejeezus out of me…waah!

I guess if you speak just loud enough, something might actually change. Like a swath of my medication. Between Friday afternoon and Monday morning no less, I made these docs get off their loathsome, spotty behinds (I can’t take credit for the latter…it’s Monty Python) and haul ass. I didn’t know I could do that.

Yes, Chip made the phone calls, sent the faxes, and did the follow up, but after I had had enough with the status quo. My status quo stinks. I’ve actually become sort of, kind of, a little bit used to losing my breath to the point where everything that can, exits at the closest orifice. (Before I do my hallway laps, I sit on the crapper for so damned long to get whatever I can out. I’d rather my waste material exit where it’s supposed to rather than while I’m sitting my goddamned wheelchair into which I collapse after a “lap.”

I lied.

When I’m beyond out of breath, I’m only dealing with waste products. Once, with chemo, everything said bye, bye. (I’m insane. I’ve walked two blocks and, strangely, I become nauseated until I urgently need to vomit. (That’s not supposed to happen. I shouldn’t feel the effects of the chemo until four hours have elapsed.) I’m at 77^th and 3^rd. What do I do? All the cars were parked fairly close together. I couldn’t, heavens, mess up the sidewalk! But I kept in for a few valuable seconds what turned out to be the best projectile vomiting experience ever! Depending on how you define “best.” Boy, did that stuff fly!

The nuclear explosion of vomit remained inside my pathetic self until I found a suitable spot between two parked cars. By choosing this particular spot, there would be no evidence of the carnage in front of any of the car doors. I really hate stepping in dog shit (or cat shit as the case may be), and I really hate walking into some stranger’s vomit. It’s plain disgusting. That night I could sleep easy knowing that I didn’t subject anyone to my expectorations. I, even, with the help of my beloved friend, Dr. Audge, who keeps a million bags on her for her daughter who invariably gets carsick, kept the cab that took me home clean. That took some doing, but it never would have been possible without Audge’s bag. Bless you, Audgela.

But yes, I do try and excrete all I can before attempting exercise. Because if I’m going to pee in my pants, it better not be more that a drop or two. So far, that’s been the worst of it. I despise not being able to breathe, but I now accept the fact that it will never come back. As you know all too well from my last post, the damned coughing scares the shit out of me.

Man, this morning the pulmonologist prescribed this fresh-from-the-farm gel caps (“pearls”) that stop the coughing mechanism. You still are able to cough when you need to, (you won’t choke to death) but you won’t when you don’t. Woohoo! So far, so good. Dr. Pulmonologist also changed one of the drugs in the nebulizer, so I can have relief all day. We have improvement.

Charlie, you are beyond right. You have to be your own advocate, because your doctors aren’t going to give you the heads up about new drugs that may help you live another day. Or live a better day. Right now, all I want is to have a life that I would choose to live given all my obvious limitations. I want my conscious moments to be as pleasant as they can be. I think after this wild weekend (for me) of change this may yet be possible. To be continued.

Which leads me back to my beloved Maggot Brain. “Maggot Brain” is a remarkable guitar instrumental that leaves me breathless, speechless, and awestruck every time I listen to it. It begins with a word from god or at the very least, the guy who is the disembodied Voice at The Hayden Planetarium if he were a black dude.

But no. I think it’s George Clinton speaking to us all from somewhere out in the galaxy. (Forget the end of The Moody Blues Days of Future Past. That’s just plain silly and pretentious. George Clinton may be too. But I don’t think he’d mind if you told him so. I think he would shake his head internally knowing that you just don’t get it.) He says:

(static, echo)

Mother Earth is pregnant for the third time

For y'all have knocked her up


I have tasted the maggots in the mind of the universe


I was not offended


For I knew I had to rise above it all


Or drown in my own shit

Amen.

Maggot Brain

I’ve been feeling really low. Oxy makes me constipated, which makes me nauseated, which makes me not eat a damn thing. The oxy may also be helping out with the nausea as narcotics are wont to do. The killer: the oxy not only helped ease my back (or head or neck) pain, it also me more relaxed. More gregarious. Happier. It gave me a quality of life when before I had none. What to do? I freely admit to all my doctors and therapists that a measly five milligrams of the drug changes my life for the better one thousand fold. Except for the nausea.

My oncologist has sent me an email with this whole mess of over-the-counter remedies for constipation. He wants me to take the oxy. No caregiver wishes to deprive me of the oxy. I will take it again but with massive amounts of trepidation. And make sure I have every goddamned constipation remedy on hand. Stuff to be taken at night, will be taken at night. Morning drugs, in the morning. Stuff to mix in liquid will go directly into Gatorade. (I find everything goes down just peachy with a glass of Gatorade. Original, naturellement.)

I’m not ready to begin the bowel clinic this evening. Tonight, It’s weed toast. I prefer rye myself. I’ve just ingested it. It is remarkable how it instantly dissolves nausea with one toke. (No tokes ever again for me with one quarter lung capacity!) The toast takes a bit longer to work but when it hits, it hits hard. (Good) No nausea tonight, but I’ve been feeling that life isn’t worth living and this should help me brush that thought out of my mind. I know it worked beautifully with the nausea- better than any legal anti-nausea drugs. Did it clear up all the nastiness? I don’t remember. That means it either worked perfectly, or it doesn’t and the rest just doesn’t matter anymore. So. I may spend the rest of my days stoned off my gourd. Hell, my short-term memory has turned to shit post ARDS, what the hell’s the difference? I just will no longer care and still remain smiling.

I finally received Maggot Brain from Amazon today. (Along with Let It Bleed to get SuperSaver Shipping. I’ve never been nuts about Let It Bleed, and I’ve been a stubborn cunt about getting the thing on cd. I have it on vinyl. Okay in a little more than a year I’ll be fifty. I think I’ve proved my point that I care less about this album than the others from their period of greatness. Gimme Sticky Fingers and Beggar’s Banquet any day. I can now have “You Got the Silver,” which I have always loved. And Susan Tedeschi does a terrific cover of it on Hope and Desire.)

The title track to Maggot Brain is one of the most beautiful pieces of electric guitar I’ve ever heard. I have now listened to the entire album, about four times in a row. There will probably be a fifth. There’s no bullshit. The album was released in 1972. One of the songs on it is “Whole Lot of BS.” Led Zeppelin II came out in 1969 with the smash “Whole Lotta Love.” Coincidence? I don’t think so. I think it’s hysterical. This is great music, and it’s intelligent. (Imagine that!) Funkadelic doesn’t ask you to buy into the whole rock star nonsense. Because it’s crap. And those later incarnations of Funkadelic, Parliament, and P-Funk with their wild space-age costumes...they're funny. Over my little head, foolish girl that I was. They were smarter than we were. It’s parody, but it works straight, too. Fucking brilliant. If I were only so smart way back when. But I’d still be locked in this apartment waiting for kingdom come. Now wouldn’t I?

(Scene: guitar is crying as Maggot Brain plays in the ears of the disabled, stoned gimp.)

P.S. I have used the "c" word to describe only myself. It makes reference to no other women in the universe even though some may actually deserve this designation. And I will never use it again except when I believe it describes me perfectly. Certainly the word is offensive, but it's what tripped off the fingers and what I've learned post-ARDS, follow the fingers. They know more than I do. Bottom line: women, you are all safe from me.

I asked Chip if he could think of any alternatives to the "c" word I liked as well, and none felt quite right. I figure, what's really obscene about this post is that I haven't felt there's any reason to go on living. Not my use of the "c" word.