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Wednesday, December 16, 2009


I try not to talk about my NF and the pain that it brings me too much because talking about being sick drives people away. My dear friends and my family stay with me no matter what, but to the casual or new friend, I must be careful. Because it does drive people away. Sometimes at lightening speed. I know it has nothing to do with me personally; it’s hard to hear someone talk about serious health issues, probably because it brings up mortality for people, a subject they just as soon stay away from, particularly as we age, and particularly in the health crazed world we occupy here in this country. Who can blame them? Still, I was grateful that I am who I am, even with my challenges. I would not trade a day of it, believe it or not. Why, you might ask…all that pain, pain you can’t describe, and you wouldn’t trade it??. Well, it’s simple really. Because it’s mine, you see. It’s me, it’s mine, and no one can take it away. I’ve asked myself many times, what I would do if an angel came down and offered to take all my tumors, all my pain, all my illness….in exchange for my friends and family. And of course, I would never in a million years do that. But would I do it if the offer was to just take it away, with wanting nothing in return? What would I do then? Still, the answer would be no. Because I think I am who I am because of these challenges, and in spite of being a whiner and complainer some of the time, in spite of being in pain most of the time, in spite of being unhappy half of the time, I’m who I am all of the time. And I don’t want to be anyone else. I’m truly happy for all the people in my life who, in spite of their own personal challenges are for the most part, healthy and happy. I am truly grateful for their lives and grateful that they are in mine. I am grateful that for the most part, I believe in G-d and have hope that in spite of the miserable mess we have made of this planet, there is hope. Pray for Faith.

Sunday, November 8, 2009

Period of Adjustment

When it comes to economics, I am the first to admit I’m not the sharpest knife in the drawer. The same goes for politics. However, it doesn’t take a very sharp knife to understand the basics. And to see that throwing good money after bad, or in the case of this country right now, BAD money after bad, is a very bad idea. Businesses fail. Often. Bailing out the auto makers, especially after having bailed them out once already, is a very bad idea. I go back 30 years when I started buying Toyota’s and some redneck yelled at me to buy American. I said I would, gladly, if they made them correctly.

The two American made cars I owned were the shop more than in my possession. I gave up after that and had cars that were built to last. And they all have….for many, many miles and little maintenance. I shed few tears for them. Eventually, life comes home to roost. People who buy the big gas guzzlers, even if they work, and then slap a ‘support the troops’ sticker on the bumper have always fascinated me. They don’t seem to connect the dots. Cars and sexual prowessness reign supreme, is all I can think of as the culprit. Call me crazy, but supporting the troops means a whole lot more then a bumper sticker. How about using less of the oil, which is what the blood for oil war is all about. Less dependency, less to war about. Give me a break, about the terrorist argument.

 There are more terrorists in this country then in theirs. They just don’t fit our description of what a terrorist is. How about men who beat their wives? They put terror in the hearts of their spouse, don’t they? Crime is on the rise, of course….it follows after the rout this country is going through. And you know what? It’s about effing time. We have been fat and happy too long. We have the smallest population and use the most resources. I read this article about “Cheap is Chic” and wanted to vomit. One fellow wrote that you could be a good watch for $7,500, so why spend $250,000? That sums it up in a nutshell, doesn’t it? Just how out of touch was this guy?? So, this is a much needed period of adjustment. It will be a long, hard period, but much needed. I say, let the automakers fail. Let them figure out how to get themselves out of the mess they got themselves into. Be a grown up, Mr. Automaker.

 I am sick to death of the ‘trickle down theory” that didn’t trickle down one damn thing to anyone. As a 56 year old woman, I can tell you that the only thing that trickles down does so from my bladder on occasion. Sorry. We rush in and throw money at Wall Street, the automakers and all the other fat cats, and leave the truly needy truly needing. Shame on us. What’s really interesting to me is the GM made it’s big announcement the day after the stocks started to rally. And now of course, they tanked again. Hmmmm. Republican owned businesses wanting back the good ol’ days with the good ol’ boys back in the saddle again.

Saturday, November 7, 2009

Love, Suicide and Popcorn Pans: A Day in Chronic Pain

written around 2000

I woke up this morning feeling pretty good pain-wise. I took my pills, because I must take them everyday, every dose, pain or no pain, in an effort to stay one step ahead of it. I take them because I have inoperable tumors pressing on the nerves of my spine due to a disorder called Neurofibromatosis. It is often feels like an exercise in futility since I am in pain regardless of the pills. But the pain is usually not as bad with them, as long as I lay flat on my back. Still, this morning felt like a good morning. A morning I could get a thing or two done. A morning I didn’t feel like laying flat on my back.

When this happens, I spring into action (springing being subjective), taking advantage of feeling normal, though sometimes guilty, thinking I’m really not sick and should be working. But that’s another neurosis for another time. This morning I set out to get a popcorn pan. Nothing fancy. Just one you can put a little oil in, add the popcorn, and listen to that wonderful sound, like rain hitting the roof, as the corn pops faster and faster and then slows, telling you to turn down the heat, take it off the burner and dump into a really big bowl. Yum. I like mine lightly salted, a whisper of butter. The best. Having no money but a credit card that I really, truly honestly only use when I have to, I decide the hell with it, I’m getting this pan. So off I go, starting at one of those big, “we sell everything” stores where the prices are cheap and the products acceptable.

Only they sold mostly pan sets. You had to buy six to eight different pans, none of which I needed, in order to get the aforementioned popcorn pan, which is really just a 3 to 6 quart job with a non-stick coating and preferably a clear glass top, just because it’s fun to watch the corn pop. No other reason. The only individual saucepans they sold had the weight of aluminum foil. Pans I would maybe take camping (if I camped) but certainly not pop corn in. Or heat water, for that matter. Something I read about aluminum being bad for you, but hey, what isn’t? Anyway, apparently, when I wasn’t looking, a rule was made that you can’t sell pots & pans individually unless they are very, very cheap or very, very expensive. This I discovered after driving around town looking first patiently, then manically, for one lousy pan to pop corn in. One pan. One 3 to 6 quart non-stick, preferably with a glass top popcorn pan. One, apparently elusive, popcorn pan.

How hard is that? It’s hard. It’s having root canal hard. It’s giving birth hard (that’s a guess). It’s ridiculously, stupendously, unheard of hard. And when that kind of hard happens, I get annoyed. Well, annoyed isn’t precisely the word I get. I kind of flip out. I mean, even when I wasn’t in this mind-numbing, teeth rattling, I want to die kind of pain, I’ve flipped out. But now, I flip irrationally out. Which I suppose is the definition of flipping out, but this was very irrational. Thusly, I drove around in tears, my pain shooting up like something you see in one of those cartoon thermometers, when the little red line reaches the bulb at top and bursts through the glass. Plus, I was angry. And hungry. Each of those things makes my pain worse. Together, it’s rather lethal. So I began to add all sorts of things to not being able to find one lousy popcorn pan. “I’m in pain,” I screamed in my car, to no one but really, to G-d. I shrieked and cried until the tears and the snot were running down my face and my shredded pieces of tissue were of no use. “What is the problem?” I demanded to know. “I don’t get it. What did I do to deserve this? I mean, I get nothing in life! I have never had a job I liked or was good at, I have no money, I have this stupid disease, I have no children and I haven’t had a boyfriend since Moses was given the Ten Commandments!! Why do you hate me so much? What did I ever do? And not only that, I keep turning the wrong way so I’m driving longer than I really have to and I’m in pain! I just want one lousy saucepan so I can make popcorn and watch a baseball game. Is that too much to ask? Haven’t you got enough to do? Why are you always picking on me? What did I ever do to you? And why can’t I be in love? Why do I repel men? There are so many really rotten people out there, why don’t you go pick on them for awhile?”

And so it went. This raving lunatic driving around in circles, trying to get home, trying to get a second dose of painkillers down my throat, feeling lonely, scared, in pain and really angry at G-d for not providing me with one relatively inexpensive popcorn pan, a healthy body and a nice man. But who could love this crazy person who also happens to be sick? And while I would never deny anyone else of what appears to be the “good” things in life…good health, success, money, healthy relationships, children…it is sometimes hard not to feel jealous. So on top of everything else, I must always stay present and aware of my emotional reaction to things, or the pain gets worse. Oyi.

I know these are those irrational, ridiculous moments, when, if one had a gun (or a lot of pills like me) they might decide, the heck with it and take their own life. This would be bad, I think. Bad because the moments we are in the lunatic mode, we aren’t thinking rationally. And then they pass, those moments, and if you’ve been despairing enough to use the gun or the pills you’re now thinking, “oops, where am I?” and you realize the popcorn pan, the pain, the non-existent love life and even the bad body wasn’t what it’s all about and you’re really embarrassed. Remarkably, I finally made it home in one piece. A friend called just as I was walking in the door. She listened to me, settled me down with some soothing words, and I ate something. I laid down, curling up with my cat, Oliver. I started a book. I was still in pain, still out a popcorn pan, and still not in love. But, I thought, I have a roof over my head, food, a couch, a comfortable bed, my cat and my friends, not to mention a family who loves and supports me, regardless of what I think are my shortcomings. And that’s more then what most people on this planet have. If I feel up to it, I’ll walk up to the store later and buy a bag of popped popcorn. And who knows? One of these days I may even get it right and bypass lunatic mode altogether, saving myself a boatload of aggravation.

Sunday, October 25, 2009

Revelation Walls (around NF)

Sometimes, a revelation is the wall. Holding back information about oneself is usually blamed for when we don’t get what we think we want: an intimate relationship with a life partner. But revealing too much too soon is a wall as well. “Take that, Mr.! (or Ms)” you think (unconsciously) as you recite a long list of things about yourself that would be sure to send the casual listener screaming into the night. No chance to grow close to someone who is afraid of you before they even know what kind of books you read or what movies you enjoy. Telling the worst of the worst within the first few hours (or minutes -eek!) of meeting someone is as damaging to a potential relationship as holding back too long. Too soon, or too long. It’s enough to drive a girl crazy. My illness has been the shield of all shields. I’ve become use to it now; use to the isolation, use to ‘knowing’ I’ll never be with anyone because I’m too ill and too old for anyone to bother with finding out just how great I really am. I make sure of it. Knowing I have much to share is as hard as knowing I’ll have no chance to prove that to anyone, thanks to a defense mechanism that is more dependable then a snake’s bite or a skunks scent. Reminds me of the story of the scorpion and the frog. Scorpion wanted to cross a pond, but could not swim and saw no way across. He asked frog for a ride on his back. Frog said “Forget it. You’d bite me and I’d die.” The clever scorpion said “Now that would be dumb, wouldn’t it? If I stung you and you died, I’d drown and die along with you” Frog thought about it and agreed to the task. Halfway across, scorpion did in fact, bite frog, sending him to his death. Before he died, frog managed to croak “But why? You’ll die too” Scorpion replied “I couldn’t help it. It’s my nature.” It is in my nature to push people away, it always has been. But for humans, there is an element of control for which we seldom take responsibility. Responsibility.

 Far easier to say “I can’t help it, that’s how/who I am” Far less work. And far fewer results. So the question is, do we want our reasons, or do we want results? On the other hand….and indeed, there is another hand. What is wrong with being alone? Nothing. Yet, when I express this to someone in a relationship, or someone who wants to be in a relationship, they think I am saying it because I’m being defensive, or have some horrible thing in my life I haven’t looked at, or a combination of all that and more. Many interesting, successful people have remained single. The pressure of coupling in this society is enormous, and one must stay in touch with your inner most self and not let those messages, whether they come from television, books, the movies or advertising, get to you. As e.e. cummings once wrote: “To be nobody but yourself in a world that's doing its best to make you somebody else, is to fight the hardest battle you are ever going to fight. Never stop fighting.” Never. Stop. Fighting
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