The Wrestler

Spoiler alert: While I don't say what happens in The Wrestler in the following post, I do talk about insights and personal conclusions, so read at your own risk!

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Friends and family are noticing something different about me, and I notice it, too. I feel like there is a big change coming, that I'm ready for something to change, but it's gonna take guts on my part.

This week has been a strange one, no doubt made even stranger by my new experiments with pot. Yes, at the tender age of 50, I was doing something all week that I didn't even do in high school or college. The results were curiously positive for the most part, but I'm not sure it did anything for the pain.

I will say that in the mornings, I was so alert that I felt like I slept like a two-year-old who's so dead to the world that you could toss her in the air and she'd sleep right through it. I've read that cannabis opens capillaries in the brain, so that right and left sides communicate instantly with each other, which is why people can feel so creative when...well...stoned. Their senses are heightened, and insights can come quickly, especially when you're looking for them.

I wonder, too, if pot somehow makes sleep more restorative, as the subconscious becomes so active. Perhaps we work through issues while we're sleeping that's in some way helpful, as this week has been fraught with insights all over the place.

Regardless, I'm finished with pot, for now anyway. The main thing I have to remember is that now is not the time to give up on life, even though certain days feel like nothing more than an endurance test. I have to wait out the suffering and just hope that tomorrow will be a better day.

I saw The Wrestler recently, and that's really the point of the whole movie--that so often, just when we're on the brink of having the things in life that truly matter, we give up on ourselves, thinking that neither our circumstances, nor we ourselves, will ever really change.

The film was profoundly moving, and it has stayed with me. I don't know Mickey Rourke, yet I feel so strangely happy for him that he mounted this tremendous comeback. (If you see the film, the word "mount" is probably not the best I could have chosen. lol!)

Unlike his brilliantly rendered character, Rourke himself did hang on through his own darkest days, and he prevailed in being "discovered" yet again. Talk about lightning striking twice. There was a tremendous amount of luck in him getting this role, of course, but no one could ever take away from him what he did with it. His work as this aging wrestler is one of those performances where you soon forget you're watching the actor, and you just see the characters and story...and yourself.

It was the movie I needed to see this season, as I feel so on the brink myself of good tidings; I just have to remember that I can't give up, not now, not ever.

The worst way I could give up would be to descend into a haze of pills, pot and god knows what else. I know what I have to do, and I know there's no shortcut around it.

Wish me luck.


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My Brush With Greatness

 

A shot of Senator Robert Menendez and me in my studio at the 2008 Hoboken Artist Studio Tour. That guy wasn't going to get out of my studio without me grabbing a snap of us together! :)

The Sweetest Thing

My friend Perry Norton sent me an exquisite poem on Valentine's Day as a source of comfort and inspiration. Perry owns her own voiceover company, so be sure to pay her a visit.


YOU SEE I WANT A LOT by Rainer Maria Rilke

You see, I want a lot.
Perhaps I want everything:
the darkness that comes with every infinite fall
and the shivering blaze of every step up.

So many live on and want nothing
and are raised to the rank of prince
by the slippery ease of their light judgments.

But what you love to see are faces
that do work and feel thirst.

You love most of all those who need you
as they need a crowbar or a hoe.

You have not grown old, and it is not too late
to dive into your increasing depths
where life calmly gives out its own secret.


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The Love in His Fists

I'll try anything to get out of pain. I read recently that cannabis can be a great pain reliever and that it opens up our capillaries, both of which sounded good to me, so I visited a trusted pal who swears by the ways of the weed, and proceeded to take some home with me.

At first, I had some serious fears. Many MANY moons ago, back in high school and college, whenever I'd try pot, I'd get completely paranoid, I'd vomit, and it would take days to recover. But I was fairly paranoid in general back then, having been raised in a critical home where my every move was scrutinized.

As I've come a long way since then, I figured, "What the hell? What could one drag do to me?"

So I fired 'er up and took a short, wimpy drag, waited about five minutes, and upon feeling nothing, took another, then another, with each one getting longer and slower. All that seemed to happen was a complete loss of short-term memory and the eruption of ravenous hunger that led me directly to the chips and salsa.

There was no high, no euphoria, just a state of strangeness that even crept into my dreams. I had one where I was writing a song, and it struck me, even in my dream state, that the lyrics were quite good. The only problem is that when I forced myself awake, I could only remember one phrase: "...the love in his fists." Eee gats. There's a mind at rest for ya. Apparently, my Buddhist readings aren't taking root very well.

"The love in his fists." Whatever can that mean? I was never physically abused as a child, but I did live in holy terror. I know for certain that my dad would have died for me, but I also know for certain that his rage was uncontrollable--the kind that could be set off for no reason whatsoever and stay there for weeks on end. It was also the kind where his fists and face would turn so red in anger that I knew if he ever did pop, I was a goner.

I was an only child until I was 16, so I completely blamed myself for his rages, thinking I simply wasn't deserving of all the love and good humor he seemed to heap upon others. To the outside world, he was everyone's favorite uncle, and justifiably so, as he was a gas to be around. But behind closed doors, he could be someone else entirely...a dark, brooding soul who could hate indiscriminately.

I know now that my dad probably suffered from some type of mental disorder (most likely borderline personality disorder, which does damage not just to the patient but to all those in the patient's life). And I've forgiven him completely; I carry no resentments, and my time with him now is cherished, as he's much older, and as a result of a small stroke 10 years ago, he's much quieter. I miss the feisty party guy and all the good times, but I certainly don't miss the specter--that looming dark figure who could so terrorize my mom and me (and later, my sister).

So I suppose the phrase "love in his fists" is a good metaphor for how I feel about him. There was love and rage, always. Ben Horowitz at The Newark Star-Ledger once observed about my music that I create worlds "where joy and peril walk hand in hand." I've always loved that review, as I didn't see that in my own work until Ben did. That's the mark of a good critic--revealing truths back to the artist in a type of sacred dialog.

I also have a lyric in my song "A Better Haircut" that says, "Ya gotta stop popping me in the jaw." That line always startles people, because the song is a type of "East Village Diamonds Are a Girl's Best Friend" (observed by another reviewer)--light, silly, glamorous and pissed. So what the hell is that line doing there? It seemed to fit the tone of the song in a James-Cagney-shoving-the-grapefruit-in-the-blonde's-face kind of way, but still, it's disturbing.

Fists, rage, hatred, terror, all mixed with love. No wonder I'm in chronic pain.


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End-of-Week Haikus

number one
procrastination
waiting for waiting to stop
lemme take that call

number two
lazy friday night
feeling like a two-ton slug
man, that's slippery

number three
my cat sleeps again
wake me when dinner's ready
scratch belly for now

Fractured

Am I really doing the best I can when it comes to this pain mess? My pain meds have been changed, from Vicodin to OxyContin, and if I screw up with Oxy (if i take too much as I did with Vicodin), I'll be in serious trouble.

Last night, I took an extra pill, not because I needed it, but because the addiction was screeching in my head. It took hold and completely obsessed me, which is the bitch of being hooked. You're battling your own brain chemistry, your own desires. I didn't want to take it, but like the person who can't resist having one too many, I crumbled and didn't feel very good about it afterward.

I've been researching a lot of alternative theories about addiction other than the 12-step approach, which is very deity-centered and touts the disease model of the condition. While recovery folks will say that you can be an atheist and still work the program, I'm not sure that's true. When notions of a loving creator are profoundly challenged, all the talk of God working in everyone's lives can sound like chatter, even delusional. I don't go to meetings as much as I once did (I used to go every day, now just two or three times a week), not because I don't want to get sober, but because the spiritual words ring hollow.

I must say, I do love the friends I've made there, I like the social aspect of getting together, and I love the experience of such genuine love and compassion.

But in my case, I'm going to have to find either an alternate or supplemental treatment that will resonate. I have to get to the root of my problem, which I suspect runs deeper than I imagine.

On the surface, I'm suffering from an organic, latent infection in my jawbone that has only partially responded to surgery. But on a different level, this disease is a continuation of something very familiar to me, which I've written about in other posts. I'm used to battling as far back as I can remember. There's always been some evil force keeping me down, oppressing my fundamental nature, my desires and my outlook.

It's easy to just escape into pills and television. The harder road would be to explore the metaphors, which I've been doing most of my adult life. It's been a tough, meaningful journey, but when the pain crippled me in '04, all bets were off. When I became suicidal, the pills were necessary in order to buy me time; they also provided a type of comfort that chemically was impossible for my own brain to generate.

But what about now? This past week or so, I've been asking myself, "Am I doing my very best today to get out of pain and get sober?" The answer has painfully been "no" each and every time. I could do better. I could write in my journal daily. I could go down to my art studio, where there is silence (unless I play music) and creative materials all around me. (I tend to create in silence, for some reason.) But in my studio, I'm alone with me, myself and I. I don't want to be alone, perhaps to avoid loneliness, but also to avoid the issues I don't want to think about.

I know what I should be doing to help matters, but if I went off the pills, there are feelings there I don't want to deal with...or perhaps I should say, no feelings at all. When it comes to certain problematic areas of my life, I've hit a brick wall, even with the years of therapy.

Yesterday, I stumbled upon a web site that used language I've never heard before, about what happens to someone with post traumatic stress disorder. It talked about dissociation, feelings of unreality, hypervigilence and loss of identity. While I've overcome a lot of this and have gone on to live a relatively full life, there are gaping holes that I still don't know how to fix.

I was encouraged by this site, as it so precisely described what I experienced as a teenager...what happens when a psyche splits into a type of duality as a means of coping. While I've improved tremendously in this area, I still avoid the pain of the fractures that remain.

How in the world will I ever get better if I think that "going back to life" will be fraught with this low-level psychic ache that never goes away, despite all efforts to resolve it?

This site gave me hope, as apparently there are therapists trained in this precise area. I've been in touch with the site's owner who will try to help me find someone in Manhattan.

Fingers firmly crossed.


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Ghost Stories

Today is one of those days when my vitality, my life force, is just so low. I'm so worn out by the pain and the pills that I have little motivation to do anything--even the basics, like paying bills and grocery shopping. It all has to get done today...it HAS to. All that's in my fridge is butter, apple sauce and maple syrup.

But pain sucks the life energy right out of you. What little of it is left I use for flamenco classes, the occasional painting, even volunteering at the local shelter when I can. But activity of any kind, particularly dancing, can flatten me for a day or more. Maybe the fatigue is from the pills. I've actually been a little spooked lately that I may take one pain pill too many and inadvertently check out of this existence long before my scheduled departure.

On the one hand, a permanent rest sounds lovely, but there's also this sneaking suspicion that I'm supposed to meet this challenge, and I have absolutely no evidence as to why I feel this way.

Like other times in my life when something deep within my psyche was speaking to me, either overtly warning me of grave danger (to the extent that I made a decision that averted catastrophe) or providing me with a general premonition that something cataclysmic and unavoidable was about to occur (and then it would), there's something now nagging at me from my center that's telling me that there's more meaning to this experience than I'm willing to admit, and I wonder why I'm fighting it.

I'm guessing it's because it means more work on my part...more silence, more journal writing, more reading, more meditation...and frankly, I can't be bothered. I'd rather watch Ghost Hunters.

But if I'm ever going to get out of this mess, I've got to follow hunches and at least be open to the possibility that something else is going on in the dimensions all around me (hence my interest in shows about the paranormal). While we humans live in three, science has now mathematically proven the existence of nine (last I heard), and something is going on there.

Whether that something can be of any use to me is a mystery, but I need to review some crucial paranormal events in my own life, as they were as real as the hands I type this post with, and maybe they're the evidence I need to find some hope in this hornets' nest of pain and misery.

While I'm trying hard here to be a good newly-born atheist (letting go of all notions of inherent meaning to terrible events and the idea of any master plan), if I'm to give up my beliefs in an afterlife, then I basically have to erase certain experiences from my brain, and, of course, I can't.

There haven't been many, but they've been memorable. Here they are:

1) The first happened when I was 17. I was driving my dad's big old Cadillac at around 2 a.m. after dropping off a bunch of high school girlfriends at their respective homes. I remember being at a red light and feeling agitated, like I wanted to run it as there wasn't a soul around. But it was a main intersection, right by Seton Hall, and I figured it would be just my luck to run it just as a cop car came along.

So I decided to sit and wait, but when the light turned green, something bizarre occurred. Fully formed sentences in my head told me to not move, that someone was going to run the light, and I froze in position--not out of fear, but more as if I were paralyzed into a type of powerless obedience.

Sure enough, after a few long seconds, a large white van ran the red light at about 50 mph. Had I not listened to this voice, I would have been broadsided and killed instantly.

What's so striking about this event, other than its obvious strangeness, is that I thought nothing of it at the time. I had a type of "of course" response, like, "Of course someone would run the light; I knew it would." And then I just went home and never spoke of it until 20 years later, not because I feared anyone thinking me nuts, but because I just forgot about it.

What reminded me of it was my friend Lynda's very similar story, about an internal voice telling her (when she was a teenager) to step back from a curb. She obeyed and averted getting hit by an out-of-control car.

It was her story that awakened this very clear memory of my own. Perhaps not coincidentally, Lynda and I went on to become very dear friends in our adult lives, meeting all kinds of joys and challenges together. Did something intervene for us both at the same time in our lives to make sure this adult friendship would happen?

Weird.

2) The next biggie wouldn't come until I was 43, quite a long time after my teenage experience. Interspersed in these years were extraordinary occurrences of synchronicity, but I'll leave that subject for another post. Synchronicity is very different from predictions or premonitions, which is what I'm sticking with here.

It was in August of 2002, just after the release of my second album, My Life of Crime. As I was planning for a trip to Los Angeles to do some shows, I remember being in the kitchen on the phone with my mom when this all-pervasive feeling of...well...nothingness wash over me.

It were as though I could no longer see my future, and the experience was so startling that I remember exactly where I was standing when it struck. I simply wrote it off as record-release jitters and the anticipation of travelling to L.A. and London to perform. But about two weeks later, I was overcome by abdominal pain, only to find out that the main vein in my liver had clotted, as well as the liver itself, and that my life was in grave danger.

I remember the doctor coming in to tell me the news with this look of shock on his face, as doctors almost never see this condition; one told me it's something they only read about in their medical textbooks.

Having been introduced to the works of Florence Scovel Shinn around this time (an author who first wrote about the Law of Attraction and the power of words in the 1920s), I kept a vision of myself in my head as an old lady planting tomatoes as a counter-measure to the premonition.

As for the feeling that I "couldn't see my future," years later I was to read an article about author Lucy Greely (Autobiography of a Face), who had told her best friend of those exact same feelings in that exact same language just weeks before she died.

Creepy.

3) This same futureless sensation overcame me about two years later, after having been in and out of the hospital for three months with an esophageal hemorrhage and its accompanying complications.

I wondered why in the world I was getting this feeling now, as it seemed that the worst was behind me and that I was now on the mend. But there it was...the feeling that there was no future before me. Nothing...just a blank slate, neither dark nor light, good nor evil, and nothing to be afraid of. It was just...empty.

Unlike the previous premonition of '02, which I didn't utter to a soul, I did tell friends and family about this one. And sure enough, a few weeks later I was in a psychiatric hospital with depression and suicidal ideation, which was to be the biggest threat to my life EVER.

Of all I've been through, I can attest that severe mental illness is the cruelest cut of all, as it so blights our subjectivity. When serotonin and dopamine aren't getting through, you can no longer choose your response to anything, and you feel like the walking dead, truly. The trick is to just HANG ON until the meds start to work.

What was particularly challenging at this time was to keep that positive old-lady image of myself in my head to again counter the premonition. It was so difficult, though, because every cell in my body was screaming to die, if for no other reason than just to end the screeching, untreatable pain in my face and jaw. I didn't want to live anymore, which made me feel that perhaps this current futureless feeling was more prediction than premonition.

The real point, though, is how did I know this was coming? How did I know any of these events were about to happen?

There've been other things, I guess, but nothing as big as these three. (I know there's a fourth, which escapes me at the moment.) While technically I haven't been visited by ghosts, I was certainly visited by something in these instances, or perhaps tripped on some space-time warp that gave me a vision of what was to come.

And then there's my mom, who just last month heard someone whisper her name late at night right next to her bed. She says in all her 75 years, she's never had a single thing like that ever happen to her. Suffice to say, she was freaked.

I watch science shows about phantom matter, dark matter, dark energy, black holes, etc., all the time. Will the paranormal all be scientifically explained one day by the mysteries of the universe that still baffle us? Even if it is, will we ever know how or why the universe was even created?

While there are no answers, I do know this: if I ever actually see a ghost, I'll crap my pants. Premonitions I can handle, but full-bodied apparitions? Get out the smelling salts.


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Part I: Blood, Guts and SpongeBob

Part I of the Whole Story

I'm beginning to wonder what it's like NOT to suffer. I honestly can't believe that I haven't yet gone stark raving mad.

Wait...back up a bit. I actually DID go nuts in 2004 and ended up in a psychiatric facility. Oh, brother. Who'da thunk? I was SO depressed that I couldn't even walk the two blocks to St. Mary's and had the suicide hotline call an ambulance to come pick me up. You know things are bad when you can barely find the motivation to walk into the kitchen. I honestly believe there are thousands out there, maybe millions over the eons, who've killed themselves over far less, as I can assure you, I don't think an ounce of serotonin was left in my brain that day.

Things had been gearing up to this point for a number of weeks...actually months. For the 18 months or so prior to a massive internal hemorrhage in March '04, I was feeling quite saucy and slick. Yes, I battled daily abdominal pain that occasionally required Vicodin for "breakthrough pain" (maybe one pill two or three times a week), but other than that, Tylenol handled the job, and I was happy to have survived a major blood clot in my liver (portal vein thrombosis and Budd Chiari Syndrome) in September 2002 (the cause of the abdominal pain).

I was so happy, in fact, that I seemed to find enormous new meaning to my life. And the coumadin I was now taking had two remarkable effects: it eliminated my chronic fatigue syndrome symptoms that I'd been suffering with for 15 years or so, AND it significantly decreased my jaw pain that had started in 1999.

To say that I was a happy camper during this year-and-a-half window is an understatement, for never had I felt so joyous. Every day felt like a gift, and my life was expanding in new and unexpected ways. As my freelance writing was going well, I was able to upgrade to a new large art studio, and I suddenly produced a prolific output of new paintings.

I also came up with countless creative ideas, one of which was the short-lived talk show "Highball! With Mary Ann Farley" at my local bookstore.

The idea of it was to celebrate local artists and personalities, with the format of it first being a Q&A over highballs ('natch), and then the person would perform.

I thought of everything. I had local sponsors pay for a nice spread for audience members, I had the video fireplace (long before other talk show hosts stole my idea :)), and I had glamour in spades.

The idea garnered such quick attention that The Bergen Record did a Sunday feature on the first episode, and I was getting hit for "bookings" long before we even did the first show.

But then something strange began to happen with my health. The abdominal pain, which had been a daily companion for 18 months, was starting to go away as well, and I thought for sure all of my good Law of Attraction thinking was manifesting in spades.

My relationship with my "creator" felt so solid that I decided to get oral surgery on my jawbone to rid myself of any remaining infection and facial pain, and really shoot for a completely pain-free life. Not only were things looking up, but I felt somehow that I had finally arrived, that so much of the awfulness of my life was now behind me, and I was in the moment for perhaps the first time in my adulthood. All goals were short-term, and I expressed my newfound loopiness by wearing clip-on ponytails of all kinds just about every day...long, short, curly, straight. I think it's fair to say I had a grin on my face just about every day.

But then...

It was a Sunday morning and I awoke feeling very achy and thirsty, thinking I was getting a bug. But by the time the afternoon arrived, I knew I was in deep trouble, as in going to the bathroom, I discovered that my stool was absolutely jet black, a sure sign that I was bleeding internally--something I'd been warned about.

As the clot in my liver had calcified, the pressure in my stomach had caused varicose veins, and in being on coumadin, I was in constant danger in having one of them burst at any time. The tar-black stool was confirmation that the inevitable had occurred.

As I'd been in the hospital so many times up until this point, the idea of packing up a bag and walking over to St. Mary's was just plain boring, but dutifully I gathered my paperwork, my toothbrush, my journal with a few art supplies, then took my place in the emergency room.

As usual, I called my dear friend Lynda, who'd come to St. Mary's with me numerous times back in 2002, to tell her simply that I was there, and that there was no need whatsoever for her to come over and be bored with me, despite her offer, once again, to keep me company. I now wish, of course, that she had come, simply to witness the events that were just a few short hours away...events that I haven't even seen in the most grotesque movie or TV dramas of extreme emergency room scenes. It was something you'd see more in a horror movie, where you'd say, geez--what sick mind dreamed this one up?

It came up upon me quick, without notice...a sudden urge to vomit, and as I had nothing to throw up in, I quickly grabbed the liner of a garbage can, while yelling to nurses that I needed something to get sick in.

At first, it was just spitting up blood into the bag, but when the basin came and landed on my lap, I began projectile vomiting volumes of pure unadulterated blood that made the eyes of the nurses around me go wide and their faces go pale.

Unbeknowst to me at the time, I'd also aspirated a fair amount of blood back into my lungs, which had the effect of suffocation, or drowning, and I could feel my vision going black. "I'm fading," I said, "I'm fading," and I thought for sure this was it...that I was checking out for good, and I turned to a young nurse next to me and asked her point blank, "Am I going to die?"

She was way too young for such a question, and answered, "Well...um...we're going to do everything we can to...um..."

She couldn't even answer the question when I felt another surge of vomit rising to the surface, only this time they couldn't find a basin in time, which meant I projectile vomited even more blood over the side of the bed, trying to aim for the garbage can that I'd removed the liner from previously.

Again, I felt myself fading to black, which I have to say was the single scariest thing I've ever felt. To feel the life force begin to drain from your body in such a violent way is chilling, lonely and just plain awful.

I then turned to the head nurse, Nurse Betty, and again asked, "Am I going to die?"

"Not on my shift!" she yelled back, and I immediately wondered what time she clocked out.

What then ensued is something you see in a scene of ER. The bed was whisked away into another part of the emergency room, and suddenly I must have had half a dozen people surrounding me, inserting tubes into veins that, because they're so tiny, would not expand wide enough to accommodate the insertion of new, thick blood.

Ultimately, a handsome Indian doctor inserted a line into my groin, which had to be stitched on, and at last the new blood was finding its way into me.

By this time, my pal Lynda had arrived, and unbeknownst to me was told by Nurse Betty that I had lost an enormous amount of blood and was in critical condition, and that she should walk into the room with a smile on her face.

She did, but with big watery pools in her eyes, which perplexed me, as it still hadn't sunk in just how bad things were. It was only when I overheard her a few minutes later on the phone with my mother, and hearing the words "critical condition," that I knew this was bad.

Yet somehow, I knew I was going to live, and Lynda and I began joking with the various personnel helping me, especially "SpongeBob," the gay nurse, who teased me that I was "a big baby" for complaining about the unanesthetized stitching process going on in my groin.

Obviously I made it through the night, and the next morning they were able to find and clamp the popped vein in my stomach. It turns out that I'd lost 70% of my blood volume, as ultimately I'd need nine pints of blood and six units of plasma to replace all I'd lost. (I was to vomit again at 5 a.m. the next morning.)

I stayed in the hospital for a week, fighting off fevers from the new blood, and mentally preparing for the surgery I would ultimately need at Columbia Presbyterian to reduce my gastric pressure, so that this wouldn't happen again.

As bad as this all was, things were to get far, far worse.

Next up: Three months of hell, followed by my descent into stark, raving insanity.


Note: Drawings were done my first night in ICU.
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Catching Flies

I haven't posted for a couple of weeks, as I've been writing the story of what happened in March 2004, when life took such a dive. I've been wanting to get it down for awhile now, just so that I don't have to tell the story anymore. If someone wants to know what happened, I want to be able to simply direct them to the blog posting, which will liberate me from having to tell such a weighty story over and over. I suppose it's a way of putting it in the past, even though it continues to play out in such painful ways.

In writing it, though, there are so many details to the story that I begin to even bore myself with it. While there's plenty of action, blood and guts, literally, it tires me to write it, so I've been carefully editing and shortening, as at the end of the day, I'm an entertainer at heart. If I'm gonna spin a tale with that much real-life drama, I've got to lighten the verbiage to capture the essence of how rapidly things declined, and how close I came to meeting my maker, with all of the harrowing details intact.

Who knows if anyone will ever read it, and who cares. I just gotta get it on the page so that I can leave it somewhere. As the World Wide Web is a fairly large place, I suspect it can handle the load.

As for how things have been the past few weeks, comparing life to a rollercoaster is an understatement. I'm working with a new chiropractor who's doing trigger point therapy--working out the knots in my face, jaw and neck that have taken years to develop.

On about two occasions, I had a couple of hours where I was completely, absolutely pain-free. There was one night that I caught myself with my mouth open in astonishment, the old "catching-flies" gape, as I felt so completely myself again. When physical pain lifts, the speed with which it becomes a memory is nothing short of shocking. Immediately, my thoughts raced towards all of the things I want to do, goals I want to accomplish, paintings I want to start. I even continued work on a song I began last year.

I was so heartened by this new turn of events that I also signed up for a one-month intensive workshop of flamenco study, where I go to class in New York every other day. The exercise has boosted my endorphins, and I've had short periods of such hope and happiness.

But in the last few days, the pain in my face lapsed back into being as bad as it ever was, and I've been popping Vicodin like candy in an effort to get the level down, not just because I don't want to suffer, but because I'm going out to dinner this weekend with my family to celebrate my 50th birthday.

Fifty. When the hell did that happen? In some, if not most, ways, I'm thrilled to say I'm younger than I've ever been. But time is marching on, and each day has a new value that hasn't existed before. Twenty years ago I was 30; in another 20, I'll be 70.

As Carly Simon once said, "I haven't got time for the pain," but it seems that pain has time for me.

Well, I can't do anything about it except accept it, hard as that is. When they say we "practice" acceptance, that's exactly what it is--like practicing the piano.

I need to get better at it.


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Another Bum From The Neighborhood

This is my first post of the new year, 2009. As I'm still achy from this flu, I snuggled on the couch this morning and was lucky enough to stumble upon the film Rocky and watch it in its entirety.

As Sylvester Stallone's career took such a bizarre, unexpected and disappointing turn after those first few Rocky movies, the lustre of the original Rocky wore off for me in the wake of Stallone's real life decisions over the years, both professional and personal, which seemed to call into question the universal truth of despair and triumph he so perfectly captured in his first major box-office success.

Yet 32 years later, I'm seeing the film with fresh eyes again, and have been mulling over what made it such an astronomical hit back in 1977, when I was a teen. Aside from his perfectly written script and flawless direction, it's Stallone's true-blue characters that are at its core.

Rocky himself is a product of his low-brow, working-class neighborhood, where opportunities are few for the uneducated, and he starts out in the film as a "leg breaker" for a local loan shark. To walk with him through his transition from thug to champion can't help but pull at the heartstrings of anyone aching in the human condition, for whether you're rich or poor, smart or leadheaded, strong or weak, Rocky--both the film and the character--makes us believe that any of us, with just that one lucky break, with just a modicum of chance, could rise to the heights, provided we have a dream and are willing to work doggedly to make it happen.

What's also lovely about this tale is Rocky's relationship with Adrian, a woman unseen by most men because of her shyness and the fact that she buries herself deep under sweaters and behind her glasses. In developing this romance, Stallone didn't miss a beat, which is why women adored this film as much as men did, as many of us could see ourselves in Adrian. She perhaps wasn't a standard beauty at first, but love ultimately morphed her into the beauty she was all along (surely a skilled acting turn for Talia Shire).

As the story unfolds, we begin to see what Rocky sees. Her skin is peaches and cream; her hair is flaxen; her eyes are innocent and pure. And never once in the film is Rocky not sensitive to her plight. Back in 1977, and right up until this day in fact, it's a relief to see a love story where the female protagonist isn't a Hollywood beauty distorted to look ugly, like Charlize Theron in Monster. While Theron's transformation into brutishness was masterful, while her acting was impeccable, we all knew while watching the film that at the Red Carpet event touting its release, Theron would go back to being a stunner.

Would an actress who really looked like Aileen Wournos have been given the chance to make the film? Of course not, which is why it's so touching that Stallone even cast Shire. She's real-life pretty--at times looking haggard and older than her years, and at others, positively luminescent.

That's why it was such a disappointment that in real life, Stallone abandoned his longtime marriage and hooked up with a string of Hollywood starlets and models, seeming to discard the very life lesson he taught us, which is that undiscovered feminine beauty (and masculine beauty, for that matter) is all around us if we only have the eyes to see it.

Perhaps the most poignant scene in Rocky is the night before the big fight, where he lies in bed with Adrian, saying that no matter whether he wins or loses, he will always feel like "just another bum from the neighborhood."

To those of us who grew up in the likes of Rocky's environs (in his case, the row houses of Philadelphia, and in my own, the streets of Newark), a little of that always lingers, no matter how far or wide we stray, and when Rocky made these utterances, he hit a very old, very personal nerve.

This unending decade of physical trials (which actually started long before 1999) has often tapped into some vague dread of mine that I will never really triumph over my own worst fears about myself--that I'm one of the chosen few who simply gets barraged with unfortunate events because of some unspoken demon curse that hangs around my neck like an anchor in a stormy sea, forcing me to battle ceaselessly the elements and live a life that, at times, has made me wonder if it's even worth staying alive for.

But then today there was Rocky, running along the Philly waterfront in his tattered clothes, towards a future where his own unlucky streak could change on a dime, and in a sense, already had in his newfound romance with Adrian. He had the eyes to see the possibility in her, which opened his eyes to see the possibilities within himself.

What I also love about the film is the element of chance, which plays like a central character. In looking through the pictures of amateur boxers to fight, Apollo Creed could have easily missed Rocky's photograph and chosen another. But Creed stumbled upon the Italian Stallion, and so Rocky got his chance to prove to himself, and us, that winners are made, not born, provided we have the courage to say yes to life.

Roman philosopher Senaca said that "luck happens when opportunity meets preparation." But even opportunity itself can often be random, and some of us get more of it than others.

Rocky could have just as easily continued with his leg-breaking career, save for the break of a different kind--a chance to beat the heavyweight champ of the world, which, let's face it, has as much of a chance happening to some poor soul as getting struck by lightening, probably less. That's why they call it luck; it doesn't happen often. And in this case, that's why they call it fiction.

I've been weepy today, probably because I've run out of painkillers and because I have the flu on top of everything else. But the tears started after Rocky did his majestic stair-climb, when it was clear that his luck (and the luck of Sylvester Stallone for that matter) had turned for the better.

I suppose I could take my own long run along the Hoboken waterfront, then charge up the stairs of City Hall while listening to the Rocky theme on my MP3 player, but I'm a bit out of shape. My flamenco dance lessons start next week for an intensive month of study, which will be a challenge for a body that's been so sedentary for the past year.

Back in the days when I had a break in the pain, I remember walking through the Broadway district one afternoon after a lesson to go buy a new flamenco skirt. I remember thinking, "Wow, I'm a dancer in New York. I'm doing it. I never even knew that I wanted to do this, but I'm right here, right now, and it feels amazing."

That was my own moment of Rocky-like victory, and one I intend to have again.

Pan shot to me doing some flamenco victory spins in Times Square.


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The Return Of Pollyanna

I continue to explore this strange, new world. I wasn't sure if this new state of acceptance was going to stick, as this journey of chronic pain has been fraught with so many hills and valleys. But it seems it has, as each morning I'm waking up in a calmer state.

What's troubling, though, is that I haven't given up the painkillers, and I wish I could. I went most of the day without them today, but by the time I got home from afternoon errands (including a 12-step meeting), my face hurt just so bad, and it was all I could think of. I ordered a refill from the pharmacy, took two Vicodin, then fell promptly asleep for the rest of the afternoon.

This is what bugs me about painkillers. They rob me of precious hours of my life. I suppose I was hoping that a new state of acceptance would somehow make me so emotionally strong that I could withstand physical pain, but that hasn't been the case, and I'm wondering now how this is all going to play out.

What I love about pain medication is that, even if it does nothing for the pain, it helps me to escape it for a short while, at the end of which I usually take more to keep the escape going. But what I hate about it is that I no longer experience the natural highs of making art or music. I no longer experience those magical moments of truth where "art happens," and I'm left dumbfounded by what I've been able to channel.

I miss these experiences...a lot.

And as I sit here, I sip on a glass of wine and smoke a cigarette, which, combined with pain medication, makes me feel like a total degenerate. I must be the picture of the classic tortured artist. I can think of friends from the past who found these images of themselves romantic, but trust me, they're not. They're sad, and I feel weak and stupid until I catch myself and just accept that this is tough road I'm walking and will therefore be fraught with mistakes.

Some of my recovery pals like to think that this pain is just a manifestation of my secret desire "to use," and I do try to keep an open mind to their opinions. But as I sit here, my face fucking hurts. It's as real as this tasty Pinot Noir and Camel Light.

Decisions, decisions.

What's been interesting is that in this new state of acceptance, I can see just how angry, bitter, guilt-ridden and jealous I've been towards those who have such healthy and pain-free bodies. I wasn't even aware that I was feeling such things until I decided to stop fighting the pain so hard.

I was even jealous of my two- and four-year-old nieces, who are so innocent and pure, so healthy, so joyous, and live in such a love-filled life. I couldn't look at them at not feel some twinge of sadness and regret, as if all of the good things of life had passed me by, and one of my only real uses now as a human being was to help them grow into strong healthy adults. In such a state of pain and addiction, my life was beginning to feel over.

It was a horrible state to be in, and only now do I see just how destructive it was to my psyche. But acceptance has changed all that. I accept now that these awful things have happened to me in my life, and it's all okay. I can deal with it. I can make something with it; I can give it all meaning, and who knows? Maybe these very writings will be the biggest thing I will ever offer my fellow human beings, which means that every twist and turn won't be wasted, provided I can stay honest and true about every detail (which tonight is the issue of alcohol and nicotine).

I read an article recently by Scott Kiloby about something called "non-duality," which is the name of what I've been experiencing, apparently. We've exchanged a couple of emails about the topic, and he closed one by saying this: "What is, is what is. And a full surrender into that brings a peace of mind totally unknown to most people. I also experience it as unconditional love."

It occurs to me that had I not gone through this terrible ordeal, I might not have stumbled upon this insight, which indeed fills me with unconditional love.

When I played with my nieces this Christmas, I was filled with such light and such joy at watching them tear open their gifts. And instead of feeling any kind of jealousy or resentment, I felt deep compassion for them, as they go through their own trials and tribulations in their growth experience. And I was happy for them that they have a family who loves them so dearly.

Everything seems poignant to me right now, although I think I'm starting with the flu. Although I hate feeling these symptoms, I can even see the bright spot in having a nasty cold in that I don't smoke when I'm sick, and this will be a good break from it for a few days...an opportunity to break the habit for good, hopefully.

I'm feeling a little like Pollyanna again, which has always been an aspect of my character and has been missing for years now. I've always felt it's been a slightly corny part of me, but how I welcome her return. I don't know if she'll be here tomorrow, but she's here right now, and I'm grateful.

The Spoils Of Acceptance

I've been walking in a strange and unexpected state. Something happened in the last few days, and I've been trying to retrace my thoughts to see how I got here.

I've been feeling profoundly more peaceful for some reason, and all I can come up with is that I'm finally in a state of acceptance.

I do remember the other night feeling at the absolute limit of my endurance, and I said, "God, I'm just turning everything over to you. Everything. I surrender. I can't fight this anymore."

I'd like to say that some divine miracle happened at that moment, but what ensued was curiously un-spiritual, which ironically led to a soothing of the soul.

As I lied on the couch thinking these words, I suddenly realized that no miracle, no matter how wished for or prayed for, was going to happen, not because I wasn't deserving of one, but because if there really was a supreme loving being, it simply wouldn't be fair to bestow a miracle on me and not on any of the other six billion souls on this earth, many of whom are in dire circumstances themselves.

I suddenly realized that the clouds above me weren't going to part with angels playing trumpets, simply because there are physical laws governing our universe, and accepting them and the havoc they can create in the human condition is perhaps one of the bravest things any human being will ever do.

To admit that at the end of the day, we really have no control over anything that happens to us is terrifying, and to trick ourselves into thinking we do or that any great "creator" is looking out for our well-being is just, well, magical thinking--a way to feel safe in a dangerous world, and a serious set-up for disappointment should things go tragically awry.

There are the obvious things we can control, of course. We can look both ways when we cross a street, we can dress appropriately for the weather, we can wear our safety belts when we drive, but beyond that, life is a pull on a Vegas slot machine, and the sooner we can get with that, the better.

Unlike animals, humans have a curious habit of asking why horrible things can happen to them, whereas animals just experience the suffering itself, without all the baggage of consciousness. When we look at animals and their troubles, do we ever ask the why of anything? Do we think that deer wasn't "visualizing" a positive outcome hard enough when it crossed the road and got hit by a car?

I'm thinking along these lines because I was recently engaged in an online group debate about the validity of the Law of Attraction, which has been so cleverly packaged and marketed as the bestseller The Secret (even though the concept has been around for ages). It's the theory that everything that happens to us basically isn't an accident, and that all things, positive or negative, come to us because we attract them with our thoughts or "vibrations."

I used to be a huge fan of the Law of Attraction, and while I still think the concept has validity (I even still practice it), I was clearly mistaken in thinking it a law, because as much as we don't want to see it head-on, bad things happen to good people all the time, and they did absolutely nothing to deserve it. The truth is that life is profoundly random, which also makes it profoundly terrifying, and that's a tough thing to get with indeed.

But as in all cases where the truth is faced, there is freedom, and in my own, I'm somehow now freed from so many of the fears I've been attaching to this pain. But I didn't even see those fears until I made the decision to accept every single thing in my life exactly as it is and not as I want it to be. That's not to say I won't keep trying to seek out relief and a more joyful existence, but for today, whatever is going on with me is what I accept, fully. And with that, I'm in pain and at peace, right now anyway. Go figure.

As odd as it sounds, far from being scary, this new notion of randomness actually gives me comfort, because it means that no one deserves to suffer, and those who do simply drew the low card. There is no other meaning to it than that. Tomorrow, things could change.

As my friend Janet recently pointed out in an email, I'm not guilty of anything (a suspicion that has been brewing in my subconscious), just the brunt of a bad break. Ascribing any more meaning to it than that--that maybe God is punishing me for something--is, as she says, "a way of framing the world [that] makes our lives needlessly painful; or I should say, needlessly more painful, because there are no answers, and it’s a terrible, cruel ruse to try to get us to believe there are."

That said, we can create meaning out of our suffering. We can use it to deepen our compassion and to give voice to an experience (such as my own here in this blog) that hopefully others will connect with, so that they don't feel so alone in their own harrowing journey, be they so unfortunate as to have one as grueling as mine.

If we can accept that life is random, we hold onto each other tighter, we laugh and cry harder, we are more grateful for what we do have, and we are more appreciative of the good times, because we know the bad can be just a car accident away. While no one would ever argue with the power of positive thinking, if you don't also accept life's randomness, you rob yourself of the experience of how fleeting, how beautiful and how poignant life actually is.

In closing, Janet said, "There is no god to condemn you to suffering or to save you from suffering. Once we can let go of that dream, that fantasy, things are easier to accept. God is IN YOU, god IS YOU. All the answers lie within yourself."

Amen, sister. Amen.

The Limits Of Everything

It's Saturday now. It's taken me two days to absorb the consultation at the Hackensack Pain Clinic, where after a long discussion about the details of my health history, I was told I would most likely be in pain for the rest of my life.

While I was told about treatments that might help--a change in medications, injection therapy (which most likely wouldn't work as this has gone on too long), and a type of brain surgery where a device is implanted to re-route the pain signals--the words that echo are the ones that sounded so final. This condition will never heal on its own, as what I'm experiencing now is something akin to phantom limb pain. The source of the pain is long gone; what is firing now are essentially memories of it.

The pain has been worsening in the last month or two, which has made me careless, as I've been smoking again, albeit one or two here and there. Still, it doesn't help matters any.

The doctor I saw was perhaps the most empathetic doctor I've ever seen. He gave me the bad news first and let me cry in a fit of shock at hearing words I wasn't expecting. I might have had an easier time hearing I was going to die than hearing I would be feeling this pain for the remaining decades of my life.

He actually made that point to me--that I was still a relatively young person who had a lot of life yet to live, and therefore something like this motor cortex stimulation (the brain...er...procedure) should be something seriously considered.

I woke up feeling just so sick this morning from all the pills I've been taking, and just so sad, as if a grey mist was circling my entire room. Of course, it might have been the dust build-up, as I can't bring myself to clean anything right now. My poor cat is acting as the dust mop. As she rolls around the floor, her fur picks up all kinds of debris. She knows something is up.

My friends in recovery are so concerned about the effect of this news on my addiction, but addiction right now seems like the least of my concerns. Whatever it takes to get me through the day is what I'll take, addiction be damned.

I'm trying my hardest to move forward. I saw a chiropractor yesterday, and will continue to see him for trigger point therapy; I've made an appointment with my old acupuncturist for Monday; and I've made an appointment with the neurosurgeon recommended by the pain doctor for Wednesday.

It's all a bit overwhelming to find myself at this level of pain again, and at this point of despondency. I suppose the question I'm grappling with now is not how much suffering one person can take, but how many times can they take it?

I'm trying to push myself out the door to work on my Christmas card project down at my studio, but I'd so much rather watch television and escape into lives and stories where things always work out.

I'm also trying hard not to feel sorry for myself, but all this trying in every direction is eroding me to the bone.

I just can't go to the recovery rooms anymore. While I'm happy for everyone that God is working in their lives, as many have truly found peace and contentment, I just can't be there right now and listen to it. Instead of finding understanding and fellowship there, I'm finding, well, nothing.

That said, I'm still working with my sponsor, who I love, as I do enjoy the Twelve Steps. But that's about as far as I can go with the recovery folks right now.

While these other therapies the pain doctor spoke of do present some hope, I just can't feel it for some reason. I'm so used to everything going wrong at every turn that I dare not get my hopes up for anything. While I said in a recent post that disappointment hasn't killed me yet, I fear there IS a limit as to how much one can bear.

Just like there are no absolute truths, there are limits to everything, and I've hit the limit of just about everything I can currently think of.

Getting out of this mess will be a miracle indeed.

Hope Springs Until Thursday

It's been a tough week and I haven't posted anything. I suppose I don't want to sound like a broken records of complaints and thoughts that the universe has diabolical plans for my existence.

But it's also been an interesting week. Over the weekend, I was surprisingly in a very low amount of pain and was faced strictly with the issues of addiction. When I'm alone in those very private moments, pill-free and pain-free (my version of pain-free anyway), I'm faced with the curious facts of my life and my history, and I find myself perplexed.

To be brief, I'm aware that I really don't know who I am without all the drama that accompanies the health and addiction issues. When things are quiet, I'm suddenly faced with, well...me. I have this wonderful life set up for myself, which I'm thankful for as I've been able to forge one despite the complications. But when the path before me is clear, I'm lost, as ironic as that sounds. I'm so used to pain and illness (physical or mental) that I'm actually frightened when things suddenly aren't so dramatic--when life beckons with potential.

Part of me fears that without drama, life will be boring, and it does make me wonder if my subconscious somehow creates problems in order to continue the pattern that has been so familiar to me since childhood.

Then again, it's hard to fathom how the subconscious could dig so deeply into biological pathologies--into my bone marrow fer chrissakes--and create such havoc.

Still, it's not lost on me that I expect disappointment in life, particularly when things are going well. Disappointment and betrayal have been constant themes, and the betrayal of my own body has been the unkindest cut of all.

I wrote at length in my journal this weekend, seeing so very clearly the sequence of events that continue to play themselves out in a way that's almost scripted; the players and circumstances change, but the results are always the same: I'm felled and crippled back to square one, constantly starting over only to be disappointed and restricted yet again by some new catastrophe.

I suppose this isn't anything extraordinary. People repititiously get into abusive relationships all the time; drugs and alcohol can be a constant theme for someone for decades; workaholics never see their folly until they're on their deathbeds. Clearly, I fall into a similar category, only my story is slightly different; I ride high with great expectations until something hits me so hard that I'm KO'd in that championship fight where I'm the odds-on favorite. This happens over and over and over.

Even though I've technically been a painkiller addict for four and a half years, I've buried my deepest self and escaped in other ways that have been just as profound, and just as damaging, throughout my adult life.

Physically, something was terribly wrong with my health starting in my late 20s and through my 30s (not diagnosed until my 40s), but that was the side story to my workaholism, which manifested as a music career. I was addicted to it wholeheartedly. I defined who I was by it, and I had no other life other than music for years. While I've never regretted, not even once, any song I've ever written (they seemed to come through me to the extent I almost don't feel responsible for them), being the singer/songwriter was extremely stressful for me as I just didn't feel worthy of the success that I knew the music could bring.

It was as though my own work was bigger than me, and I didn't have the self-esteem it took to shepherd my songs and performances to the success they deserved. But I sacrificed myself for them completely out of pure ambition, and that's the affliction any addict will tell you they identify with.

Despite discovering these new insights, I woke up yesterday morning with that familiar plaguing pain, which again so deeply disappointed me. Surely, when I had these insights the night before, I thought for sure they would be curative. But they weren't, and I'm now back on the pills.

The Pain Center at Hackensack Medical Center has agreed to offer me a consultation on Thursday. As I don't have PNH (talked about in an earlier email), I feel like this is my last hope for relief.

Earlier this evening, my spirits were descending into the logical place where most chronic pain patients with my condition find themselves--that the only logical place left to go is to check out for good, which would be the ultimate painkiller.

As soon as I had that thought (almost to the second), the Pain Center called saying they had an opening Thursday. It's not the first time something like this has happened--that some kind of intervention happened at exactly the moment I needed it, offering some glimmer of hope to keep me going for a few more days. It's like my guardian angel puts in an emergency report to God, saying, "We've got to do something or we're going to lose her."

I've no idea what to expect Thursday. While tonight hope might not be springing eternal, it's at least springing until Thursday.

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How To Shop For Olives

In reading through these blog entries the other day, I thought, "Jesus Christ! Talk about self-centered! Everything is me, me, me; I, I, I." Of course, the purpose of a blog is to talk about our lives or our thoughts or our experiences, but today's blog entry will offer my advice--a service of sorts--free of charge.

While shopping last week at a ritzy boutique food "shoppe" (as opposed to the ordinary "shop" or "store" or "bodega"), I discovered how to semi-scam the $7.99-per-pound olive bar. Here's how:

1) Fill the container with a good amount of sun-dried tomatoes, as they're very lightweight and ordinarily quite expensive. Don't put any oil in; you can add your own when you get home.

2) Select calamata olives. These are also very expensive, and are therefore a good deal at $7.99 per pound. Don't add any of the brine. While you don't have brine at home, you'll eat the olives before they get dry. Trust me. Kalamata olives go quick.

3) Don't buy anything with a pit. As you don't eat a pit, you shouldn't pay for a pit. Make sure any olive you select is stuffed with either air or something expensive.

4) Enjoy many free samples. While a staff person may see you do this, they're probably getting little more than minimum wage and could care less how many olives you stuff in your mouth. If you get one with a pit, be courteous and take one of the small plastic containers and put it at the end of the bar, where you then insert your pit.

This will also encourage others to eat free olives, thus making a lot of people happy. Granted, they'll be happy for a very short amount of time, but a few seconds times many people equals lots of joyfully tasty moments. Eat free and inspire--two important activites you can do at once!

I know I had more advice on this but I can't remember it right now. I'm still stuffed from two days of eating turkey and am not thinking straight, although I do think I've recalled the more important aspects of olive shopping.

Enjoy!

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Soul Paralysis

Timing is surely a perplexing thing. Yesterday, I decided to clear off some outdated papers hanging on my fridge, and one was an old schedule of my flamenco teacher, Victorio, who's now teaching in a new location.

What was under it was a message I received almost two years ago from self-help author Gay Hendricks of The Hendricks Institute in reply to a question I'd sent about the spiritual nature of chronic physical pain to hear what he had to say about it.

I was in a very challenging state of mind at the time, angry at God and at a world that no longer made sense to me, for absolutely nothing I was reading was providing any solace at all for my wounded soul and for the spiritual debacle of my aching jaw and face, which back then was scoring an 11 on a 10-point pain scale.

As I was on the institute's email list (and still am), I decided to put Gay in the hotseat in response to the its current newsletter at the time, as he and his wife, Kathlyn, always seem to have such a clear point of view on all matters of the heart and soul. I thought for sure he'd have nothing to say to me (why should he when no one else did?), and I'm quite certain there must have been an angry tone to my question (which unfortunately I can't precisely recall).

In reading his words yesterday and this evening, they make far more sense to me now then they did back then, when I wrote him off as just another nut who was out to blame the victim, for right from the start, he shared a life challenge of his own (weight issues in his youth), noting that his healing began when he realized "I was the source of my reality."

At first it was difficult to equate a weight problem and chronic pain, for the former seemed controllable to me (you can decide what you put in your mouth, which sounds unfairly simple, I'm aware) while the latter was out of the patient's hands. (How does one take personal responsibility for a bone marrow disease?)

But in reading his words again more carefully, something is resonating for me this time around.

He told me a short story of how he'd been obese since birth, and that his weight problem seemed to be genetic in origin, so he could have easily disowned it. But he had an insight in his 20s (when he was 100 pounds overweight), which was that he chose at that moment to be the source of the problem, and once that occurred, he began to lose the weight and has stayed slim ever since.

"It's the act of choosing to claim the source of the issue that liberates the healing energy," he said. "It's when you align your consciousness with it and say, 'This is me. This is happening in me. I'm obviously making it up because where else would it be coming from?' That's when the magic begins to happen."

At the time, these words just sounded kooky, hollow and abstract, for what did he mean by "source"? It rang of self-help jargon, for surely there was no question that the pain was IN me, but how was I "making it up"? Still, I kept a print-out of his words, where they became buried on the fridge until now.

And so I've been thinking about it. In a recent post ("The Wait Is Over"), I talked about embracing the pain as a part of me--not something to be waited out or wished away, but rather recognizing it as an essential part of the journey that has made me all I am today...a person I've come to like, actually. A lot.

And then I began to think about the "source" of this pain--of all pain in my life, not just the physical--and I could see how much I've absorbed the strengths and weaknesses of my relatives, for good or bad, and how I've embodied, in particular, the awful truths they've believed about themselves.

When you're a kid, your parents are who they perceive themselves to be because of their own upbringing, and you accept them as that, just as you accept the perceptions they have of you as absolute truth. And it dawned on me that, despite years of therapy, the scars I carry from the harrowing, constant criticisms are actually still open wounds to a degree.

When I was a child, any time I bravely expressed any individuality, there was some dark force that seemed to be lying in wait for me to take that chance so that it could seize the opportunity, almost ravenously, to denigrate, mock and ridicule. It hurts me to even remember this, because I can feel a twinge of fear that all those comments about me were actually true (words I find hard to repeat here, as they still hurt so much).

I've had to learn to detach myself from them and realize that my loved ones were so insecure themselves, and that it must have given them (my dad in particular) a sense of great and much-needed power to hurt and manipulate a defenseless child.

I could sit here and plague myself with questions as to why he did this--why anyone would feel a need to destroy instead of build up the foundation of my personality--but they can never be answered, really.

The only thing I can do is tend to the scars, and claim my fears now as strictly my own, not coming from any outside source. They're within me, and it's up to me to own them, and to realize it's me who's choosing to not let them go.

Why? Well, again it's just history repeating in a brain loop that I must somehow learn to interrupt.

I'm not on any pain medication today, so I've been asking myself why I haven't gone down to my studio to work on the new paintings I'm so thrilled about, and the answer is clear. I want to forge ahead with this thrilling work, much like I did as a child, when I joyously wanted to venture into a world of discovery and chance.

Back then, though, these forays were met with sadistic criticism, and my disappointment was profound, even crushing. I suppose it's not big leap to see my fear that any stabs I make at individuality, fulfillment and success will be met with terrible disappointment, and so I freeze in a temporary state of soul paralysis where I simply don't move, literally.

Yet I'm aware that if I don't start taking some real chances here, healing on any level won't happen for sure.

I'm afraid that a pain-free, pill-free world will be stark, scary, disappointing, and perhaps worst of all, boring. That might surprise some people, as I seem to be all about adventure and creativity and putting myself out there. But have I really?

Today is a clear-headed day, and the pain is low to moderate. Will I be so open to these thoughts when caught again in the vice of crushing pain? I'm always optimistic that the most recent attack will be my last, but realistically, I'll be confronted with the beast again, I know. Will Gay's words resonate then?

I can't think about this anymore. Where's the remote?


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The Pendulum Of Consciousness

Some interesting developments with my hematologist. He attended a conference a week or two ago about a very rare and very underdiagnosed genetic mutation that he thinks I might have. It's hard to fathom that anything could be rarer than my current diagnosis (essential thrombocythemia), but apparently one exists, and I might be a likely candidate.

Mind you, in all of Europe and North America, there's only about 7,000 diagnosed cases, so my chances of being one of them is akin to winning the TriState Lotto, but if anyone is going to have this thing, it could well be me, as "rare" is my CB handle all things health-related.

Not only do I have a rare blood disorder, but I've had even rarer complications, which has led many a practitioner to say there's "something else going on" with me, as nearly everything I've suffered with has been something a doctor only reads about in medical textbooks. As my GP has often said, "no one actually gets these things," and both he and my hematologist have never seen a patient like me in their combined 60 years of practice.

Called Paroxysmal Noctornal Hemoglobinuria (I still don't have it memorized), it's a condition that causes the exact types of clots I've endured, even down to their location, and explains a patient's inability to heal from infection (hence the trouble in my jawbone), among other things.

My doc has told me not to get too excited that this could be me, but I told him that as disappointment hasn't killed me in the past, why stop the optimism now? We're going to do the test the Monday after Thanksgiving, and odds alone would suggest slim chances for diagnosis, but hey--it's nice to live in hope for once.

In fact, this feeling of hope truly has buoyancy. Even though these posts often sound so glum (because, well, I often am), I tend to have a curiously buoyant spirit, even in the worst of times. People who don't read my blog would most likely be surprised to know of what I endure on a daily basis, as my interest in life, and especially my work, can sometimes eclipse anything else I'm feeling in that moment, even pain (although to be honest, that's rare).

This was noted to me by my life coach, Nancy Colasurdo, this week, who's one person in particular who witnesses these extremes. In the evening, she'll read about a particularly bad day I'm having, yet upon meeting the next day about my goals, I'll get so fired up about my dreams and visions that it's hard for her to reconcile these two seemingly disparate states.

Mind you, no matter what I'm feeling, I still dress up in some swanky or nutty outfit almost every day, the impression of which must surely be a curious one. Lately, not only have I been sporting a shaved head, but also a fabulous Marc Jacobs coat that I got for a steal on eBay, along with an aviator's cap that Nancy applauded as yet another stunt I'm "getting away with."

I must admit that I, too, can be baffled not just by my overly harsh life experience, but also by the joy I can still feel in spite of it. As Nancy recently mentioned, she can only imagine what I'd be like without all the pain and pills. If I can get as much done as I do in this painful, drugged state, just think of what I could do pain-free and alert.

Of course, there's a good chance that I'd just watch more television, but with this looming possibility of a better diagnosis and a new cutting-edge treatment, I actually feel a twinge of fear and excitement at the thought of a ball-and-chain-free life. This pain and fatigue weighs me down so much that in the same way one's arm seems to float after intense downward pressure is lifted, I fear I'd instantly launch into a full-body orbit once these pressures were removed.

Occasionally, I do have a spectacular day, when I awake feeling healthy and pain-free, and I suddenly remember what it feels like to be 15 years old again. I'm looking through the eyes of someone who doesn't even think about her body, and I can assure you, it's heavenly.

If I am diagnosed with PNH (let's just go with the short version), my doctor told me that the treatment will cost...drum roll...$365,000 per year! Upon seeing my face after telling me this, he quickly followed up with an even more staggering fact; that the government will actually pay for it. I'm not sure which part of that equation is nuttier--the cost of the medication itself or the government's willingness to value the life of one citizen that much. I suspect it's all part of this new research, but whatever the reason, I'm grateful.

Of course, I'm not even diagnosed yet, but it's so like me to get so far ahead of myself, which is why I hired Nancy in the first place.

I do need to stop thinking about it, though, as it all seems too good to be true. To anyone reading this, please say a prayer for me that when they do the test, whatever result they get will be the correct one, and that whatever that result is, I'll be able to handle it, for either answer will swing the pendulum of my consciousness to the extreme.

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Life In The Penumbra

Today is Sunday, and I woke up feeling somewhat better. I took some Xanax yesterday, which scares me as benzodiazapenes have the potential of permanently scarring the brain, but drugs in the Valium family are known for their pain-relieving properties for facial pain. I don't have the same addiction issues with Xanax as I do with opiates--for some odd reason, addiction to that drug has never set in. I use it sparingly as I'm so leery of it, but what relief it can bring, even a small dose.

I tend to flog myself when I resort to any type of pain meds, thinking that I should be stronger in character to overcome things through mental means, but that's just as nuts as taking too much of something. The cliche "happy medium" comes to mind here--a concept I should perhaps consider more, if that's even possible for an addict.

I got up around nine, and after making my morning coffee, I popped on the TV, and there was that History Channel show again about the plague in Europe in the 1350s. As it has before, this show gives me great comfort, because it's a story about human suffering on an unimaginable scale--a story that was recorded with the written word (as opposed to similar human die-offs like the peoples of Central America who succumbed to European diseases in the 1500s).

It reinforced the notion that the scale of human suffering can vary wildly. Some go through life with the ordinary trials and tribulations of the human condition, while others suffer in such grotesque ways that we avert our eyes, as such unfairness is unthinkable.

Perhaps this is the reason for the current popularity of the philosophical/spiritual concept of the Law of Attraction, which seems to be taking root everywhere. While this idea has been around for ages, current books like "The Secret" have become red-hot bestsellers as they offer people a greater sense of control over what happens to them if they can just "vibrate" and visualize differently in their thoughts and actions. They have faith that if they expect more of life, they will get it, and surely there is some wisdom in this.

When one stops and thinks about it, it really should come as no surprise that this "law" contains such truth, as the evidence for it is all around us. We all know someone who had an ideal upbringing and marches into their adulthood having a natural love of themselves and others. They often find love and success early in life, and clearly it's because they're unencumbered by the baggage that plagues the person who suffered horrendous abuse in childhood, be it emotional, physical or sexual.

When survivors of these diabolical ravages begin to come of age, their view of the world and of themselves is grossly distorted, and much of their energies, if not all of it at times, is spent trying to repair the damage that never should have occurred in the first place. Yet at the same time, they must also embark on developing the survival skills that any human needs so that take can care of themselves and their families (provided they have the emotional stability to even have a family), and to lead an independent life.

For these folks (myself being one), the Law of Attraction provides a new hope and a clear map towards a better existence, whereby we can consciously tap into the power of expectation, which seems to come so easily to the products of happy childhoods.

Yet there is also a grave danger in thinking this law so absolute, for when bad things happen to good people, we can easily slip into the "blame the victim" mentality. If a child is kidnapped and killed, parents can wonder where their thinking went wrong that allowed this to happen. If we are felled by a disease that causes lifelong crippling, we can blame ourselves that we didn't visualize hard enough to prevent this terrible event.

I suppose my point is that there are limits to everything, and that there are no absolute truths in life, for if there were, we would indeed have complete control over everything that happens to both us and the ones we love just by creating a pretty picture in our heads.

A few years ago, I had a lovely friendship with a woman, Elle, who actually started out as a fan of my music. We had a long discussion over dinner one evening about my work and about art in general, and I attempted to explain what art was for me, and that I knew it when I created it.

I said that the click happened when my song was somehow able to encompass a broader statement about life than what was there on the surface. If it was a happy tune, there was also an aching sadness just below the surface, and if it was a sad song, there was a foundation of hope somewhere deep inside it.

Elle (who has a massive IQ) explained it much better. She said that art and music like this exists in the "penumbra" (which Webster's defines as "a space of partial illumination between the perfect shadow on all sides and the full light") and that this is the area in which the Supreme Court grapples with its decisions in order to find truth. It's never precisely in one location, but rather in the grey area between light and shadow.

I never forgot her explanation, as I'd discovered this heady concept all on my own in my dogged attempts to write something so seemingly simple as a pop song. It's wonderful when humans from such varied backgrounds can come to such similar conclusions via completely different routes.

I don't see Elle as much these days, as she's suffering greatly herself, only her trial is full-blown multiple sclerosis, and she's attempting, quite valiantly, to find her own comfortable place in the penumbra.

For both of us, the shadows in our lives are quite dark indeed. But I like to believe that it's in such a state of darkness that any light is best seen, provided we choose to open our eyes.

In a world where there seems to be no absolute truths right now, I suppose that's one truth I can count on.

Hope springs eternal.


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Tea and Sandhogs

It's been a hard day. I'm tired. I'm lonely. I'm unmotivated and angry. I slept most of the day, after taking too many pain pills.

I woke up to watch a segment of a show on the History Channel on the Sandhogs of New York, the guys who keep the underworld of Manhattan's pipes in order. An elderly man was being honored for his years of service. The jokes about him were hilarious, the love in the room was palpable, the commaraderie was enviable.

At one point, the camera turns on him in a private moment, and he said, "If the good lord were to take me tomorrow, I'd say thank you, I've had a good run." Then the shot panned to him and his wife holding hands, walking a street in Ireland, where they were obviously now taking a vacation.

If I were to die tomorrow, would I be able to say the same thing? Would I be able to face the "good lord" to thank him for my "good run"? How wonderful it must be to experience such a feeling.

I began crying at the question, as I'm crying now as I write this. My jaw and face hurt constantly. To be honest, I'm hard pressed to say it's been a good run.

I'm sure there are others who think my life enviable, and on certain days, I'm certainly grateful for what I do have. But when one is in chronic pain, it's hard to get to the next thought let alone a state of gratitude.

I've been crying a lot today, when I haven't been sleeping. I can only hope tomorrow will be better.

My cat, Hope, is at my feet now, sleeping peacefully. Usually when I get on my computer, she comes over to look for a treat, but she's not bothering me now. She's come over just to keep me company.

I think I'll make some tea. Time to take a break from so much nothingness.

Popping Mad

Oh, man. Today is really bad. There's just something about this pain that is so debilitating, so crushing to the soul. I tell people it's like someone injected acid into my face and jaw, and lemme tell ya, it's hard to imagine at the moment what could be worse in this life.

Perhaps there are equivalents, like losing a child or being unjustly imprisoned for years, but as far as I know, this particular type of jaw/face pain (also known as atypical trigeminal neuralgia) is the only condition on Wikipedia called "the suicide disease," as sufferers find it so unbearable, and ultimately become despondent and suicidal because it's so untreatable.

In fact, that Wikipedia entry is truly the best description I've read so far of what I suffer through, and believe me, I've read plenty.

I know there are unconventional things I've yet to try to find relief, but frankly, I'm exhausted. Plus, life goes on; I need to earn money to stay afloat (disability doesn't cover my expenses), bills need to be paid, obligations must be met. And there are those days or weeks when the pain just isn't so bad, and I enjoy simply living my life. The last thing I want to do during these periods is make an appointment at that swanky pain clinic. I want to paint, or hang with friends, or buy shoes, or visit my nieces!

When things are bad, though, after so many years of this ordeal the idea of making even more appointments and telling the whole story all over again--with full knowledge that absolutely all of my previous efforts have been in vain--is just torturous. It's certainly easier to just pop pills and forget about it all for awhile--to drift off into a temporary Utopia where the darkness isn't quite so black.

I don't have any pills right now, though. Damn! I want to just check out; go watch "House" reruns and pop pills whenever House does. I want that smooth feeling to come over me that everything is going to be okay, or better, that everything is okay. I want the pain to lift just a bit (it never goes away completely), so that I can sigh and maybe take a nap.

Instead, I sit here wrapped as tight as a drum, wondering how any creator could have screwed things up so completely to have this condition even exist.

Sometimes people say to me, "Everything happens for a reason."

"Oh, really?" I respond (just in my mind, of course). "Let's hear you say that while I slice your skull with this machete."

I don't even know what I mean by that other than I'm obviously pissed and upset and sick to death of that irritating concept called "spirituality."

I suppose if I had a boyfriend or husband, my workload in finding a cure would be divided. But every responsibility of my life is on my shoulders and my shoulders alone. Normally, I actually enjoy this and rarely even think about it. But when I really need help of the more dire sort, I'm acutely aware that I'm in this by myself, and it's up to me to do it all--to seek out the treatments, make the appointments, find transportation, then follow whatever program is laid before me.

For years now, it's all been paid for with credit. Yes, money is another issue.

My friends in recovery encourage me to call someone when I'm suffering, but sometimes calling friends or family is worse because no one knows how to advise. No one has dealt with anything even close to this, and I actually feel bad for them that I can sometimes be so inconsolable. It gets frustrating for us both when every suggestion they make is something I've tried, and while this often makes me sound negative, I'm basically just reporting the facts.

Ultimately, I end up doing a faked cheerfulness before I get off the phone, just so that they don't feel so bad.

It's just way easier sometimes to sit back and start popping. Sometimes friends say, "But you could die from those pills!" Trust me--I'm not clinically depressed when I say, "Yeah? And?" The only reason I don't check out is that there's so much of the good life I've yet to live. I know it exists--I've seen it in movies.

I dunno. I gotta find some pills. This is just awful.

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