Does suffering has a value?

To get this out of the way: I happen to be a God-believer. I am neither agnostic (whatever that’s supposed to be (whatever that is) or an atheist. I truly believe there is a God out there, and I believe that I’m not him.  To the disconsolation of friends and acquaintances who practice specific faiths, I accept that there are lots of versions of a God (or Higher Power). I’ve tried several of them in both sickness and health. Belief works only if your focus is on something that is not you. Having said that much, let’s just disenengage  from comments like “You’re doing it wrong” or “You have to pray to the one True God.” Sorry, people.

That said….

There may be one God but there are many ways to seek him.There are treatises, dissertations, religious writings that attempt to justify suffering in the world. Suffering that can be of the soul or of the body. It seems to be a big deal in both Christian and Buddhist philosophy, particularly, that in some way that is difficult to discern, suffering brings us closer to God on the path to some form of Enlightenment or even ultimate Redemption.

If that works for you, if it comforts you, I give you much joy of your belief. If you believe suffering of the body is good for your soul, more power to you.

For me…I find the very concept of suffering as a good to be meretricious and vicious. In other words, I suggest that it’s bullshit. That’s me, where I sit. What value?

I’m not talking here about why God permitted unspeakable historical events like the Holocaust, the Armenian genocide, or the horrors of Cambodia/Kampuchea under the Khmer Rouge. I’m talking about why God permits individual human beings to suffer torments to their bodies or souls.

I want to know why God invites and encourages us to reject him. But I also want to know why and how there are people who endure immense suffering of mind and body but who continue to still believe in God’s mercy when none is to be found. What creates a Thérèse of Lisieux or a Bernadette of Lourdes? After watching Martin Scorsese’s incredible film Silence, I need to know what belief allows the religious to suffer martydom at the hands of enemies. I need to know how a man or woman of formerly deep faith can follow the injunction of Job’s wife, to “curse God and die,” or become an apostate. No, I don’t ask for much, do I? I just want to know everything. I want to know how studying their lives and deaths can benefit me at times of terrible personal need.

As I face tomorrow with anticipation and alarm–a spinal procedure that may lessen my mounting agony since early 2011–I want to believe that the outcome, regardless of what it is, will benefit me in ways I can’t possibly foresee.

I want to be well again. But I want to understand that wellness is of both the body and the spirit. I need to accept the various meanings of sickness and health. I want to know through understanding the nature of Hope.

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Surprise, surprise! PLUS a real hope

I got my access to WordPress restored!

Yeah, it’s back. I made a mistake entering my “credentials,” but it was the right mistake. Far effin’ out for once.

This posting is a good place to set and a place-marker. A week from today, March 24, I’m allowing an anesthesiologist/pain management specialist to open my back and plant a spinal cord stimulation device in there. I will become a Bionic Man. I can’t eat or drink (even water) for 24 hours before, and I can’t shower or bathe for a week afterwards. I have to keep the area dry.

What might it buy me?

Mobility. Being able to walk with no pain, or with pain significantly reduced to the point where I can sometimes even smile again. Smile. Believe me, it’s been a long time since my facial muscles could manage that trick. For years there’s not been much to smile about except, perhaps, the misfortunes of others.

Like I’ve said (and said and said and said) I’ve been living with chronic pain since 2011. I’m in Room 101, home of The Worst Thing In The World. In my specific case, the WTITW is not rats–it’s diabetic neuropathy. I’m not too good at walking. But I’m really good at crying and cursing God. Oh yes…and even though my atheist acquaintances pronounce God a crock of shit, I happen to believe with full heart in his malevolence and cruelty.

See, this is what happens to you in a torture chamber–you lose faith in everything but a curse .

I want to be proved wrong. I want to be wrong. I want to believe God is something other than a celestial sadist who spreads the misery around from one person to another in no specific pattern. You don’t have to do anything to merit this kind of punishment: you just have to be alive.

My first expectation when I heard about SCS was that I’d be able to run again. I used to do that most mornings from 2005 until 2011. It wore me out, it pumped me up, it made me feel human. I’ve been told that I can still say goodbye to my running days. I can’t expect to heal sufficiently for me to send in my application for the Boston Marathon, or even a turkey trot.

You know what? Dayenu. Being able to stand and walk at all without pain will be enough for me. Not sitting here crying will be enough for me. Not having to chew Vicodin like it’s Necco wafers will be enough for me. Not having to curse God as my personal Torquemada or Richard Topcliffe will be enough for me. Never heard of Topcliffe? He was really good at what he did. He killed people slowly.

Maybe it took Anthony Babington half an hour to die at St. Giles’ Field. But I’ve been carrying my private Richard Topcliffe around in my body since early 2011. No one who’s been afflicted this way can see the world as anything other than a vision of Hell set on Earth.

Maybe it will somewhat end on March 24. Maybe I can begin to feel human again, as someone with an illness, not a perpetual curse. That hope is what’s been carrying me. That hope is what I’ve lived for. I don’t expect to fully recover on March 24 and become a tango dancer on the 25th. Still, it’s pretty to think so.

I’ll just say it: I don’t just want to walk. Fuck it. I wanna tango!

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Carrie Fisher, Chronic Illness, and Having a Sensayuma

When I learned that Carrie Fisher had died early yesterday, I did what most people who know me would expect: I sat in front of this laptop and I cried. “It’s what I do.” Now…see if  you can sense the connection between me and the following “celebrities”: Note that I’m not a celebrity whore. I’m somewhat selective about what and who gets me to put out emotionally. So Carrie Fisher (the latest inspiration), Amy Winehouse, Philip Seymour Hoffman, and Robin Williams tore into me because they had a few things in common that make them resonate with me. No, I don’t read supermarket schmatas. I don’t obsess over Brad and Angelina. In fact, I really don’t give a good fuck about them except that Pitt’s made a few truly remarkable movies.

But if you guessed “drug addict,” “alcoholic,” and “manic-depressive,” good on you, you win! You stayed awake through class and you get an A that earns you precisely zilch.

My personal stake is not news here anymore. I’m a recovering alcoholic, I have bipolar disorder, and I have sympathy–and empathy–for people in those special corners of hell. I’m certainly not “normal”: don’t insult me by suggesting that I am. I have an occasionally vitriolic temper, and for years I obliviated myself with alcohol. I’ve never made a serious suicide attempt (what’s a frivolous attempt?) but there’s always a first time. Nobody knows when despair might beat out the desire for self-preservation, and get me to treat myself with special forms of hostility.

If you take alcoholism and bipolar disorder, then add them to chronic pain, you’ve got the makings of a pretty wicked cocktail. Some really nasty shit lives in those little vials, bottles, and envelopes. Combine them, and it’s a bit like stepping in front of a slightly moving railroad car.

I don’t remember precisely when Carrie Fisher outed herself as a drunk, druggie, and crazy lady, but it’s been awhile by now. She’s not the only person to send out postcards from her particular edge–lots of us have done that–but her special “charism” was to use her fame to spread the word about addiction and mental illness to the greater population. Hey, gang, there’s some nasty shit out here that can really terminate you with extreme prejudice.

What made me love her, and what makes me grieve for her now, is not the fact that she was a “substance abuser” and somewhat cray-cray–it’s that she presented her life as a really bizarre schtick with a million punchlines, all of them told on herself. Carrie took us into her very real vision of Hell and made us laugh while she did it.

I’ve had to learn that presentational style. Or did it come naturally?–I don’t know. I don’t have much of a sense of humor. I can be (and have been) a crybaby and rageaholic. That’s a part of me that I truly hate because it makes me hateful even to myself. Particularly to myself.

There are some serious and powerful ways to step back from a precipice. One is pets: dogs. cats, rabbits, whatever…something that forces us to love something besides our own misery. The other can be the kind of humor in which Carrie Fisher specialized. It can be self-mocking, sarcastic, and even nasty. It can take in our families, our work, and our other relationships. Remember Fisher’s one-woman show, Wishful Drinking, with its cutting descriptions of her father and mother, most notably how her father, the singer Eddie Fisher, consoled the recently widowed Elizabeth Taylor, “with his penis.” If we can stand apart from what eats into us, we can reduce its ability to sink its teeth into our guts. We can lessen and even break its grip on us. And that is quite something. It’s a gift I’ve had to discover I have and learn to cultivate it. I’m not always successful, but sometimes the sense of detachment just appears and enables us–even me!–to laugh at things that may not be at all funny.

For all that, today I still feel grief and sadness for Carrie Fisher, a pained and wonderful lady who has become (and will remain) an example of how a transcendent spirit can get us through what might otherwise be unbearable. Rest, Carrie. And thank you for your gift of laughter.

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Up to HERE

I’ll point in the direction so you know precisely where HERE is. It’s what James Baldwin once called “a region of my mind.”

I had an appointment scheduled for tomorrow to go to the pain management center in Pittsfield, MA. It’s not going to happen. Pourquoi?

Because for me to get there, I’d have to drop $80 on a round-trip taxi ride. I have $80 at the moment, but I’d also have to fill a prescription and then keep myself fed (and the cat in litter) between now and the beginning of June. That is a long, long way to stretch not a lot of money.

I’m also trying out a new prescription psych med, and I’m not 100% sure how it will affect me. I’d rather be near my local emergency room in the off-chance (it really is an outside chance) that the new drug makes me feel depressed, manic, or suicidal. I don’t want any of that. Do I? Ahem.

See, the Elder Services office in Berkshire County has a few volunteer drivers who take old farts like me to and from markets or medical appointments, and nobody is available tomorrow. Everyone’s on vacay. What a great scheduling system. And what a break for me and the other old dodderers. I don’t have a Plan B except to hang out with my cat, lay back, scream, and watch MSNBC all day. Who can resist Eden?

So tomorrow I need call to reschedule and just pray that by the time the new appointment rolls around, one of the drivers is back, all to get a rip-snorting 22 cents per mile reimbursement to go a total of 30 miles, down and back.

So I’m back at the square where I can only dive for the bottle of Advil and invoke the spirit of Sir Richard Topcliffe. Elizabeth Tudor’s prime torturer is more a presence in my life right now than any doctor I’ve seen lately.

Get why I said I’m up to here?

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Lasciate ogni speranza, voi ch’entrate

I’m tired of screaming about my pain. I’m tired of screaming and you’re surely tired of hearing about it or reading it.

But that’s what I do. Why do you think I started a blog about life inside chronic pain, because I’m a detached observer?

I’m tired of bitching, whining, and complaining about pain which is unceasing from the moment I wake up to the moment I fall asleep. Every waking hour is a horror, a form of living on a mini-rack, and I’m starting to convict myself of seeing treason in the very body which constantly afflicts me. In Merrie England 500 years ago, the period of the Tudors, male traitors were hanged alive, castrated, disemboweled, and finally decapitated. I don’t imagine any of this felt too good, but at least that agony would end within a half-hour [see the clip below], depending on the skill or intent of the  executioner. Chronic pain, however, doesn’t have an end-date that I can figure out. As Sir Richard Topcliffe, Queen Elizabeth’s principal torturer and executioner, told one of his Jesuit victims, “No man is silent on the rack.” No kidding.

I’ve come to recognize that I’m bound to a life in which I must follow Dante’s injunction: abandon all hope. That’s not quite reassuring.

I’m also stuck in the heart of the opioid issue in New England and, I gather, most other places. I cannot get opioids because what I can get is so tightly regulated that I have to go months at a time living on Advil. Right now I can’t even “score” marijuana (my preferred analgesic) unless I can dig up another $200 to get a certification for medically licensed pot. And I’ve heard that the distributors price the stuff so high that it’s actually cheaper to go out and spend a minimal amount on heroin. No, I’m not going to do that, but I’d also be lying if I said it never occurred to me.

Right: take two aspirin and call yourself in the morning.

The thing that people who don’t suffer from chronic pain can’t get is that that a life inside chronic pain takes you over and rules your entire life. In order to go to a market a half mile from my house, I have to take a local bus. More often than not, I wind up crying while waiting or crossing the street. That’s how much it hurts.

Go ahead and call me a “pussy” because I have issues with living in constant pain. I don’t care what you call me. I’ll just suggest you perform a physically impossible act.

I’ve had it suggested to me that I “give the pain to God.” Really? I have done that more times than I want to admit. I’m not interested in being crucified. The “turn it over” suggestion comes from people who can walk without suffering. I’m not one of those people.

Well, I got a call to go to the pain center in Pittsfield, MA, on Tuesday afternoon. I might get temporary relief. But I’ve got to own that this is it for the foreseeable or unforeseeable future. And it’s a horror of fear and pain.


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Low points on the feast of freedom

Last night I went to the 2nd Seder of  Passover (that’s Pesach to the initiated).It could have been the worst night I’ve spent anywhere in ages. It was so depressing that even the food did very little for me–oh, yes, it tasted good and it kept me alive, did it not? And for that alone I should be grateful. I guess I am…except:

…I was cold and improperly dressed. And…

…I was in so damned much neuropathic pain that I felt unable to stand it. And…

…I was almost at the end of two weeks of being an involuntary non-smoker, not from some la-di-da pursuit of health, but because I damn well could not afford to feed my tobacco addiction until the Social Security money hits the bank, and because…

…my neuropathy was eating me alive, and…

…people handing out free advice about pain management got just a bit old…and

the only person who got it without a translator (and who got me through the evening) was the rabbi, a gentle and inspiring lady who lately has had her own (forgive this dreadful word-play) Cross to bear. She described the punishment my body has received as a form of slavery, my very own and golden form of life in the House of Bondage. No shit. I told her something I have actually shared only with my two sons: my expectation that in all likelihood, I’m not going to get out of my seventies, and that someone will have to take my cat because he’s only 8, and is likely to survive me by quite a few years. It’s really amazing to discover what you think of first when you contemplate mortality.

I know some guys back in Jersey who belong to an AA meeting called “Drop The Rock,” and it has a very simple premise: Like most drunks, we excel at beating the fuck out of ourselves simply because we’re not perfect. Hey, wow. Imperfection. How about that?

That is all to say: I was simply so profoundly sad on Saturday night that the evening was mostly unbearable. Because…

…I also felt amazingly guilty about whining about my so-called “lot in life.” Piss and moan, piss and moan. Other people have some bad shit in their lives too. Sick children, sick parents in “end of life” situations, marital poison, money or lack of same. How many of them bitch, whine, and complain? I don’t know. I just wish more people did so. Yep, call me Debbie Downer. Last night it sure fit. I’m surprised the people who got me home didn’t try to kill me on the way.

I hope you never have to experience this for yourself–the sense of abandonment, of even God taking a rain check because you (me) are too depressing to even listen to. You reach the point where you make yourself sick.

Gratitude is very easily lost or allowed to slip away. About a year ago, some of my loyal and persistent readers may remember that I was awaiting a judgment from the Superior Court of New Jersey, a judgment I prayed would free me from lifetime alimony that had gone on for 18 years. The judgment did that. In fact, the judgment was dated April 13, 2015. Did I feel free? Not quite. I went insane for several weeks. I suffered from almost nightly vomiting, panic attacks and ambulance trips to the local emergency room. I had begun self-medicating. I didn’t know how to cope with winning. I didn’t know how to cope with my family. I didn’t know how to cope.

This seems to line up with the Festival of Freedom. Pesach. Passover. The celebration of our deliverance from a House of Bondage and into a world where we must now take full responsibility for our own lives. And that condition of freedom can be terrifying.

From the Christian scripture?… One of the Gospels tells of how Jesus cured a man who was born crippled, who had to lay on a mat in the street and beg. Yes, it was “a living,” but the cripple convinced himself that Jesus’ power could free him. Well, yes…but there was a problem. I personally need to wonder if the paralytic knew what he was asking. “Jesus, free me so I can work.” “Okay, my child, you’ve got it. Now what will you do?”

Indeed, what will the paralytic do now that he’s physically sound? Begging is off the table: the man can work. Does he have the inner equipment to be honest?

What did Kris Kristofferson say?–Freedom’s just another word for nothing left to lose? I suppose so. If we’re very fortunate and blessed, we find that voice inside us again.

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Banish Misfortune

I’m becoming self-protective…or selfish. Well, I’ve always been selfish, but learning how to actively protect myself is another story entirely.

I have gathered unto myself a rather significant collection of movies, TV series, opera broadcasts, even jazz. It enables me to hide somewhere other than myself.

What do I love? Anthony Minghella’s film of Cold Mountain, a beautiful, sad, and deeply cathartic film of life in the mountains of North Carolina during the late days of the Civil War. I can watch it endlessly because the end, as deeply sad as it is, shows me hope and rebirth, new life nine years after a tragedy that tears apart several Carolinian lives late in the War. I cry every time. Yeah, me, who would cry at Bugs Bunny cartoons (“I’m gonna get that kwazy wabbit!”). A child conceived in the one night of love and passion given to the protagonists, W. P. Inman and Ada Monroe, is the embodiment of hope and new life. If we’re allowed to project beyond fiction, their daughter Grace Inman will live well into the 20th century, knowing what of her history? We can’t know for certain, but I have to believe she will grow up to gentleness and her mother’s example of faith with a steel spine, and her father’s example of courage and a relentless love of home.

Sometimes I need to block some things.

I don’t know when I’ll be able to watch Midnight Cowboy again, for example: a harsh Boschian vision of life in New York in the late Sixties, a time when I was very much a part of what I beheld.

The English Patient, another Minghella film–an illicit love that never dies. I can’t watch it. I’ve been to that place, and it still hurts.

Death in Venice. Dirk Bogarde was luminous in a journey into self-confrontation that was truly frightening because the poor stiff never saw it coming.

There are so many. And I need to monitor myself. Movies can make me deeply sad. Sad movies can cheer me up. Go figure. I need to enjoy, but I also need to be on the alert to guard against things that can hurt me to no good end.

Music is exceptional. Even moments like the scene in Halevy’s La Juive–in which the goldsmith Eleazar contemplates sacrificing his adopted daughter Rachel–carry me along because it’s all about the music. Heard through the great tenor voice of Neil Shicoff, even terrible tragedy and (in this case) the fruits of anti-Semitism, can be raised to something glorious.

Music is indeed therapy. It’s a cliche, yes? Yes. So what? It gives us peace even in moments of seemingly unbearable turmoil.


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