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A GATHERING INNER NF STORM

…We sense there is some sort of spirit that loves birds and animals, and the ants – perhaps the same one who gave a radiance to you in your mother’s womb. Is it logical you’d be walking around entirely orphaned now? The truth is, you turned away yourself, and decided to go into the dark alone. Now you are tangled up in others, and have forgotten what you once knew and that everything you do has some weird failure in it. -


 Kabir / The Radiance (13th Century) Translated by Robert Bly


 I want to make a noise with my feet I want my soul to find its proper body


Nicanor Parra / Piano Solo Translated by Miller Williams


I struggled about where to put this..which blog...and IF to post it at all. I wrote it a long time ago, and parts are probably in other things I've written....it's not the most uplifting, and I do go in and out of these feelings, but I know other people have them....nothing makes me angrier then reading about someone with a challenge illness who "never complained"....sorry, I have a hard time with that one. Especially if the pain is like mine is....hopefully, you'll understand you are not alone!! It's long.....


 It started out as a sexual fantasy. At first, I didn’t recognize it as such, since any and all of those feelings have long since died. At least that’s what I had thought. So it came as a total surprise to me when the tingling I use to feel south of the border came back to pay a visit. I hadn’t fantasized about anyone, including movie or rock stars, since I was a girl.


And boyfriends? Well, I haven’t had one of those since Moses came down, so sexual fantasies in general were as new to me now as they were when puberty first began to rear it’s sometimes ugly head, paving the way for a series of disappointments that eventually led to my dismissal of all fantasies, and just for fun, of any hope and all dreams. But, fantasies, by definition, are not to be taken seriously, and trying to make sense out of them or telling myself they are stupid, defeats the purpose of having them, doesn’t it?. Still, whenever I close my eyes and imagine myself with someone, I instantly begin to judge those feelings as meaningless, stupid, adolescent and even childish, admonishing myself before I can really experience the pleasure of them. After all, no one I ever fantasized about is ever attainable. Some aren’t even real. Just amalgams of faces I have seen, or not. I just can’t afford to allow myself the experience of that kind of pleasure. No big bible belt reason, nothing like that. Just embarrassed. Embarrassed because I know it probably will never happen again.


 And that makes me more lonely than I already am, which is bad, so is it worth making it worse for a few minutes of pleasure? I know there are many “broken” people in love. I’m just not them. Few have desired me, even when I wasn’t old and ill. I’ve had a few boyfriends along the way…but a “for keeps” kind of thing? Pffftt. Never. I’ve heard the speech “You are so wonderful, you’ll meet someone special someday” so many times I could vomit. Hearing that from one’s mother is bad enough. But it is especially hard to take when the speeches pour out of the mouths of dispassionate men.


Yes, everyone’s heard those speeches. I’m not that different or special. It just is what it is, and it hurts. There was a time when I wasn’t sick, old and self pitying. There was once, for a short time, when I even let myself believe I was pretty. When I was younger, I had lovers; but wrote them off, never allowing myself to fall in love and really let go. Too fucking scary. I understand that my situation, except for my illness, is my responsibility. Why was it so fucking scary? Well, at 15, I thought I’d be dead at 20. At 20, I was sure it would be by 25. And at 25, I had a tubal ligation, not wishing to pass along my genetic disorder, the one I was so sure would kill me, just in case. Just in case I lived to 30 and accidentally got pregnant. Why not have fun, have a little unprotected sex? No aids on the horizon then. STD’s didn’t worry me, as they didn’t worry anyone else during those times. But surprise, surprise, lucky me, I lived. I lived past 30, 35, and at 40, needed surgery to have tumors on my cervical spine removed, or would be paralyzed from the neck down. I would have been paralyzed for certain without the surgery, but thankfully, am still ambulatory. Than, at 45, tumors on my lumbar spine began to cause so much pain I thought I would commit suicide. They are inoperable this time. I struggle with suicidal thoughts constantly, for I’m still in agonzing pain much of the time. Even with pain pills, I am always at a “5” on the one to ten scale. Laying down is my best position. I can’t sit more than 20 minutes without being in horrible pain.


So I take the aisle seat at movies on the rare occasions I go, and am unable to fly anywhere for a vacation which I can’t afford anyway. And the “cure” is killing me. The pills. My liver, gall bladder and heart are all now at risk. The fun just never fucking stops. Bladder infections. Digestive issues. May as well be 120. I do have friends and family, thank G-d, but being beholden to everyone in the world is a horrible way to live. It is a conundrum, that’s for sure. Thankful I have family to help me, guilty as sin. If it was someone else needing the help, I wouldn’t judge them for a nanosecond. But one is always harder on themselves then they are on others. Universal Law or something. And the comparisons! Those are a killers. Look at what this one and that one is doing, even with their disabilities!!! What’s wrong with me? Look at what this one and that one is doing, even in pain. What’s wrong with me? Back to the fantasies. They came out of nowhere and involved some third rate actor no one in their right mind would look at twice. But there is no sense or sensibility to fantasies.


They leave me wet and wanting and I don’t want to be either. It is far to painful to recall something I know will most likely never again pass my way. I may have flown, I may have soared, on painless wings of rapture; it does no good to wonder of a memory I can’t capture Oh G-d. I want. I desire. Why is this such a joke? G-d made me sick, undesirable, and now, old. Nothing fulfilled. Nothing. I constantly struggle with wanting to be a part of something that’s bigger than myself, of contributing in a big way that will make a difference for more than a handful of people. And the political atmosphere surrounding pain management is as bad as in some foreign country without the kind of laws America once had.


Past tense because even the constitution has erroded into nothingness. It is obscene, and getting worse all the time. We have crumbled on our knees to the addicts, giving them more power by taking away the drugs that help millions because of our fear of them and what they may do to us. Yup. The desire to die rather than continue living this empty, painful life in agonizing pain is becoming harder and harder to resist. A few years back on Christmas Eve, a holiday I don’t recognize or celebrate, I was as close to suicide as I have ever been. The pills were lined up in neat little rows, the glass of ice-filled Coke was glistening in a tall glass next to the them, the tears were flowing, the romantic comedy was on and I knew no one would even start to worry about me or look for me for at least 32 hours, when I had to be at a dinner party. I figured they would go an hour or two before even starting to wonder about me, and then, would have no one to call to check on me. There isn’t anybody to call. I live alone in a small eight-unit apartment building, with only three units filled at the time. The other two people were gone for the holidays, and my family doesn’t have their numbers anyway. In fact, neither do I, not that it made any difference in this situation.


 By the time family missed me and began to call the hospitals or decided to drive the hour it would take to get to my place, if indeed they decided to do that, it wouid be done. And chances were, they wouldn’t drive out here anyway. My logical brother would convince my worried sister that there was nothing to fret about, and I probably just turned the phone off and went to sleep. The going to sleep part would be right, anyway. In the end, it would be a day before anyone came out to check on me, and for sure it would be too late. Why I stopped myself, I don’t know. Actually, there are many days on the calendar when I could get away with such an action, and times when I am convinced my family is secretly hoping I will actually do it. “Oh”, they would say, “She’s probably happier now” and all the rest of the usual garbage people say when something like this happens, but really, it’s a cover-up for the relief people feel when all hope is gone, when they feel powerless to help, and when they think the person considering such a move is too much trouble, demanding too much effort. I mean, my threats of taking my life are real, but people tire of despondency, probably because it flies in the face of faith, and that’s unacceptable to the faithful, or to the people who think they are. And my sister’s first husband’s death was a suicide. You’d think they would know. Guess some things are never learned, or are too difficult to think about.


The threads that make the tapestry of my life are torn, tattered and falling apart, as threadbare as life itself. Maudlin as it seems, it doesn’t feel like it matters anymore. Not me. Not my life. Not anything. Now all I need is courage. People call those who take their own lives cowards, but you try planning a suicide. It takes a lot of courage and inner strength to steamroll over the “will to live” and say, “I’ve had enough…I can’t do anymore. I’m in too much pain, I have to little to show for my life, no matter what I try it falls apart, I’m lonely, I’m tired, and most of all, I’m in so much pain it’s hard to keep going…I need to leave…now.” I know. I’ve tried planning it. I was once told by a psychic that people who kill themselves are instantly sorry. But let’s face it, no one really knows. I’ve done the living thing and aren’t too thrilled with it.


People always tell me I am courageous, and that they didn’t know how I do it. So why, then, is it such a leap to acknowledge that I am tired and ready to lay down and die? Why is that such a sin? It isn’t, as far as I am concerned. But I guess I’m not ready. I guess I’m afraid. I guess I want to hang on to that teensy tiny bit of hope that maybe, just maybe, things will get better. Talk about your fantasies. I’ve been hanging onto that one for a very, very long time. I don’t know how much longer I can hang on; my fingertips are sore, my palms are sweating and I’m slipping. I wake up every morning, roll over and pop a bunch of pills in my mouth. Then I lay there for another 30 minutes or so until the pills take affect and I can get up without excruciating pain. I drink some water or juice, and if I don’t have any doctor appointments or errands, I lay down on the couch. I answer emails, write a little, read a lot and watch TV. Much too much TV. Movies, mostly, but still too much. At noon I take more pills, and then again at dinnertime and bedtime. I take so many pills, I feel like an old woman. Even my mother, who was a hypochondriac before really becoming ill, didn’t take as many as I do. I have every illness she had and some of my own, for good measure. Genetics.


My brother and sister escaped those diseases; not me. Every. Single. One. Plus. Pills chasing fucking pills. The ones I take for pain make me constipated, so I take something for my constipation. I can’t urinate easily anymore, so I catherize myself and get bladder infection after bladder infection, taking antibiotics at least two or three times a year. I take something for osteoporosis, an anti depressant, sleeping pills. I have such an arsenal, it would take Lord knows how many to kill me, and believe me, I’ve thought about that. I’d probably just get sick. I haven’t eaten fast food, dairy, or greasy food in I don’t know how long. I don’t eat eggs, rarely eat anything with butter, I use olive oil, don’t eat things with the “bad” oils….well, some, but rarely. BUT I HAVE FUCKING THROUGH THE CEILING CHOLESTEROL. I have a RARE genetic disorder, so when it comes to “these things are rare” as in side effects of the drugs, I GET THEM. WHATEVER THE RARE THING IS, IF IT’S BAD, I GET IT. You’d think I should buy a lottery ticket but it doesn’t work that way. it’s only the BAD rare things,not the good ones. Okay, I love chocolate. So kill me. Whoops. It is. Killing me.


It’s not like I haven’t sought help. At my funeral, if all my therapists show up, that in itself would require a hall. I am so sad. I feel so bad. I feel like such a fucking loser. I just can’t help thinking this is all me. My NF, my pain, my failures, my lack of relationships, money, children — it’s all my fault. All of it. So you see G-d, I just don’t know where to turn. I have prayed, I have asked for advise, I have read everything I can get my hands on with regard to steering my own boat, yadda yadda, have done everything from the est training to years and years of therapy, have seen healers — I JUST DON’T KNOW WHERE TO TURN, WHAT TO THINK, WHAT TO DO. And yes, I cuss You out. I’m sorry. Geeze, what does a girl need to do to get a little attention from the Almighty? I’m basically a good person!!! I don’t lie, cheat or steal. I’ve never hurt anyone intentionally, and apologized if I hurt someone unintentionally, providing I’m made aware of it…..I’m a good person!!! I know “bad thing happen to good people” but this is the dea l— NOTHING EVER GETS BETTER FOR ME, NOT EVEN FOR A LITTLE WHILE.


I personally know of someone who is pure evil. Why does he get to keep living when he causes nothing but damage and hurt to the world? Most people, when they have a challenge, like my sister when her first husband died, come to the end of their particular “challenge.” But for me, the light at the end of the tunnel has always been a train. Always. I never get to the “other side” because THERE IS NO OTHER SIDE I do believe that there are people on the planet who hold the place for non movement. Just as some people leap tall buildings, move mountains and make things happen, some of us just shut everything down. I’m a shutter downer of things. I really think that if I weren’t here, things would move forward. I just hope that someday, something I do with regard to the politics of pain will make a difference to someone. I hope that the little things I write and post help someone through a tough time. I don’t want to moan and groan all the time without at least trying.


Almost always, the pain just takes over everything. I’m no genius, but I am convinced that suffering opens up brain cells that would otherwise be fast asleep. Not that I want to continue suffering. But pain and suffering are two separate issues. Pain is what happens to us. Suffering is how we deal with what happens to us. Not a unique theory, but it can help when the pain gets so bad I want to die. In the meantime, we all need to be less afraid. Fear is running our lives in this country, taking over everything. It’s a powerful emotion. In some situations, that emotion protects us from would-be predators. Out in the wild, it’s good to have and should be honored. In the urban wild, it’s a different animal altogether. To protect ourselves against these kinds of predators; the thieves, rapists, junkies and killers, we install bigger locks and alarm systems for our homes, our cars and even our person…mace, knives and guns. “Know thine enemy” may be the first rule of war, but becoming the enemy is a dangerous thing. And in the War on Drugs, that’s exactly what the United States has become: the enemy. The enemy of sick people, people in pain, people who can no longer access the medication they need to feel better, because of this fear on the part of our country. Good doctors are being arrested on a daily basis for dispensing pain mediation to people in chronic, intractable pain, leaving them with no where to turn. I watch as our government crumbles to its’ knees to the addicts, trembling in fear before them, as though they were the rulers of the Universe.


The leaders of the big, powerful, US of A, unable to shutdown the real predators, the cartels, have turned their attention on it’s people, by attacking patients and the doctors who treat them. Now grant it, predators who come into pharmacies waving guns and stealing pharmaceuticals is a problem. But again, are we to behave like an animal caught in a snare, chewing off our legs to survive? Because that is what is happening. Our country is chewing off it’s legs by way of eroding away the constitution, in order to protect itself against these predators. And a legless constitution is no constitution at all. We are in the midst of something so insidious, so dangerous, it should make the hairs on the back of your neck stand up. News networks are “censoring” ads paid for by organizations with viewpoints that oppose our government. Soon, all networks will be owned by the same group of people, and what you see will be only one viewpoint. It’s already happening. CBS censored an ad by “MoveOn” an organization that criticized the current administration. And the current administration wants to censor the organizations who dispense information to their members regarding legislation in the works. I thought criticizing the administration was illegal in other countries, the ones that we love to hate.


But it seems it’s true here as well. Fear. Our government is afraid we will hear the truth. These are the things that should make you fearful. But instead of chewing off our legs like our government is doing, let’s change it’s leaders and get back to the government that our forefathers envisioned. And so, if I must be alone, I want to know that my government isn’t going to turn it’s back on me. I need it. I need it to be strong for me, when I cannot be strong for myself. And I need it not to cower to those who want to destroy it, by destoying me. I don’t know how to manage my anger around all the injustices around me. The politics of pain management, government erosion of basic human rights, tampering of voting machines (this one doesn’t surprise me…even though allegations of voting tampering have been made since voting began, there is clear evidence of it having taking place during the last election….Republican sweeps by people no one ever heard of until the election, fixed machines…it’s enough to drive a person crazy, and since Republicans own and operate the Diebold voting machines, it isn’t hard to figure out how they get away with it). And on a more personal note, Valentine’s Day, that Hallmark Holiday that makes my skin crawl, is just around the corner. Another reminder of the hole in my chest where my heart should be. Gaping and wounded, it batters me, that hole, with a sometimes gnawing, aching torment one day and a feeling of the wind rushing through the next. People with children mark time by their growth; others, by songs or movies they have seen. Those memories, the ones of songs and movies, torment me madly.


Oh, how it aches. My tears should have long ago dried up but the well must be deep, for my eyes surprise me with a fresh waterfall every now and again. The uncontrollable sobs come from the same dark place, perhaps from where my soul once was or still lies hidden but for the occassional appearances in the way of prayer. Praying for peace. Peace in my heart, if it is still there, or a prayer to find my way back to my heart. I need to find it, it can’t find me. But how does one find one’s own heart? What search and rescue team must be dispatched to the scene? When someone is housebound due to pain, it’s diffiuclt to go anywhere, meet anyone and move on with one’s life. It must be done from the confinds of one’s own home, and that is what is so difficult. I long ago missed my chance. Once, I believed that the love of my life, the man I never met, died in Viet Nam or someplace, somehow, else. How can one sustain life when one is so miserably lonely? I look around me and feel the Universe is making fun of me by giving me the family and friends to love, but not allowing me to have my own, special person. I don’t covet the big homes and fancy nights out. I never have. But I do covet love. If coveting “thy neighbor’s spouse” is a sin, is coveting a faceless person whom I’ve never met a sin as well? I guess even a sick person with nothing to call their own, no money, no career, no one to love can be a sinner too. Bummer. It’s one thing to have everything you want. It’s another to want everything you have.


Because that would mean wanting my life just as it is, pain included. And that’s a tough one to swallow. But maybe swallowing it will fill up that hole. I covet the healthy I covet those who are pain-free I wish to get to “the other side” of my challenges and come through whole I wish I could speak five or six languages and be better educated I want to be in love and have someone return that love unto me I want to have a career I can be proud of and successful at I want to be financially independent I want all these things, and I didn’t even know it. My life is more than half over and due to my physical challenges and the pain, the possibiity of achieving any of them seems slim. What is left? How deep can this pain of being alone and sick go? What am I living for? There is no one to hold my hand and tell me it will be okay; to rub my back and legs and bring me food and care for me. I have cared for others this way, though not for long periods…not in a forever, promise sort of way. And there have been times when others have done that for me but not in a forever sort of way, either. I want to be whole. I want to be well. I want to be free of this life and try again, or not. I just want to go HOME at this point and work it out with G-d, who for some reason, doesn’t care for me, for I must have done something to displease Him, big time.


I just don’t know what it was, so how am I to ask for forgiveness? I think of my last session with Alexandra. It went so deep, our work. It’s not like I hadn’t thought of those things before; it’s just that I thought of them in a deeper, different way. And now I don’t remember much about it. But it hurt. Remembering the decisions I made so young…forever kind of decisions at fifteen years old. I thought I’d be dead, I was so sure…I gave up on life at fifteen and now, thrity five years later, have no way to retrieve that time, no way to go back and say, wait…no way for the teacher I told to hold me and say “I’m sorry” I just scared him, I think. He wasn’t much older than me, but he seemed older. How could he know how deep my conviction went? Who could he have told? My parents had me seen counselors from the time I was in eight grade on up. They thought I was suicidal, I think. They knew I was depressed, but I would not open up to anyone. I started thinking about death at the age of eight, when my grandfather died. I clearly remember sitting on my bed; There was a drop in my ceiling that came out and went the length of the room. I had pasted little pink felt flowers across them that I made. I sat on that bed, in the dark, staring out my window into the darkness. At that time, there was nothing but swamp past the back yard…nothing but darkness and stars up above. I stared out at the stars, thinking of my grandfather.


I knew cognitively that I would never seem him again in this life…I knew what death was even though my parents would not let me attend the funeral. Four years later, when my grandmother died, they did. It was there I saw my father cry for the first time in my life. I was twelve. But this time, I talked to G-d for the first time. I had heard someone use the word “eternity” at the Shiva, which was the gathering of people to eat, talk and remember Phil. I asked what it meant, and I remembered hearing “forever and ever” but it still didn’t mean anything to me. And I asked G-d, I tried to feel in my bones what that meant, that forever and ever, eternity thing. I could not wrap my mind around it. I still can’t. My mind couldn’t handle the information…and in order to make sense out of it, I decided grandpa still did exist somewhere, in some form….he had to…it didn’t make sense any other way. So where was he? In what form? I didn’t know, but it felt better, just knowing his spirit was still there, even though I didn’t know what spirit was. Mornings are the worst, now. Especially Monday mornings. Knowing that the days, the weeks, stretches out before me in an endless cycle of nothingness leaves such an aching hole and feelings of despondency and lonliness I feel like I’m going to throw up before I get up. I want to take my bats and balls and go HOME. ----------------------------------------------------------------



2 comments:

  1. My God. I am so, so sorry. I am also so deeply sickened by what you had to endure. I am crying for you, and for me...for us. No one even tries to understand. This is all I have, who I am and how I feel. I cannot be more real. Your story, as I write this with no understanding philosophically, religiously, medically, morally, or logically why I hurt and everyone just treats me like a "drug-seeking" loser. I have goals, aspirations, loves, things I would like to do. This is my life. "undiagnosed pain". I used to be a pianist. I used to be a real person. This defines me now. My heart is broken for you.

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