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  • The Biggest Pill

    The pain levels in my face have been raging for the last week or two, and once again, I am overwhelmed. If it were only the pain, and I could still carry on with my life, I might be able to handle it, but it comes with debilitating side effects:  the staggering fatigue that the painkillers cause, the inability to move ahead with dreams and plans, the interruption of creativity and my social life, and, of course, depression.

    But probably what's worst about living with chronic pain is that there's really no happy ending in store when it's all over, because in the world of chronic anything, it's, well, never over. I recently watched the movie "Wild," about the journey of Cheryl Strayed (played by Reese Witherspoon), who after the death of her mother decided to walk the Pacific Crest Trail as a means of redeeming all of the bad choices she'd made in her life...her promiscuity, which destroyed her loving marriage; her drug abuse, which included shooting heroin; and an unwanted pregnancy, which resulted in an abortion.

    While the movie was wonderfully made, criss-crossing the past and present in Cheryl's mind as she made this ungodly 3,000-mile trek, it clearly was telling yet another incarnation of the hero's journey, where someone heads out into a dangerous world in one state of mind, goes through all kinds of trials and challenges, and at the end is redeemed. That story is as old as writing itself, most likely, and Americans are particularly fond of it, as we love to believe that so much of our destiny is within our reach, if we only have the courage and gumption to go after it. With a can-do attitude and a solid work ethic, we can achieve our dreams, no matter what our past was like, and somehow be made whole again, particularly if we can cleanse our spirits along the way and find communion with whatever higher power works for us.

    It's all such an inspiring notion, unless, of course, you're living in chronic pain. In this kind of life, fairy tales don't apply, nor do bible verses, motivational speakers, or self-help books of any kind. Perhaps one of the most painful emotional aspects of this particular journey is that there are no paths blazed before me to tell me what to do or how to get out of this, or what the goddamned meaning of it all is. As humans, we just love meaning, and when none can be found, the loneliness is unlike any other. When things are going well, we can believe that some greater power is at work for us, but when senseless tragedy or agony occurs, never do we feel more abandoned, or worse, that there was never any greater power there in the first place. The illusion is totally shattered, and the clarity of it is heartbreaking.

    Chronic pain is such an unthinkable turn of events that when the healthy person thinks of it, he or she feels a chill and thoughts quickly turn to something else. I mean, what Greek writer ever penned a heroic tale about being crippled by an unrelenting pain condition for which there is no cure?  What great lessons are there to be learned about feeling tortured every fucking day, from the minute I wake up until the minute I go to bed? If some director were to ever film my life story, there would be no arc. There is no overcoming with chronic pain, no redemption, no beating the odds. Yes, there are days where it eases up, and my mind begins to race with plans as to what I want to accomplish, but inevitably it spikes again, crushing everything in its wake, and I'm once again consumed by disappointment.

    This cycle has played out over and over since 1999, most acutely since 2004, and I sometimes just don't know if I can take it anymore. I've often thought of going off the medication, just to see how much of the pain I could actually handle, as at least the fatigue part of my life would be gone. But to be honest, the pills, while I hate them, are also often a refuge. They don't make me high anymore (unfortunately), but they can create a soft place to crawl into, hateful as it turns out to be as I despise the sleep they induce, which robs so many hours of my life.

    I know that I've been gifted in many ways, and I treasue the many means of self-expression I can use to purge the misery of all this, if only for a few hours. I can get lost in writing a song or painting a picture, or even writing a blog entry, but the beast is there when I finish, and I feel so ruined, so useless and so full of a constant, seething rage that I know most likely makes matters worse, but how can  I undo that feeling? If I were to watch my child being tortured every day, I would be enraged every day. There's no coming to terms with it.

    And that's basically that. I've nowhere to go from here, other than to hope I get lucky and find a cure or to live out the remainder of my days which will all most likely look exactly like this one. There will be no great moment of redemption, no celebration of overcoming, no slaying of the beast, no raising of my arms to the sunrise in victory. I've searched far and wide for answers, have had countless surgeries, have tried every alternative treatment, and so far nothing has helped. Every few years, a discussion board pops up on the web for people similarly afflicted and it will buzz along for a year or two, but it ultimately dies out when everyone realizes there are no fixes for this. We just have to go on the best we can, unless we take our own lives, which I've known some patients on these boards to actually do. I'm at the point now where I realize that the best I can hope for is that I will get lucky and someone out there, finally, will be able to help me.

    That's really what it comes down to. Luck. If I've learned nothing else from this experience, it's that luck is a much bigger driving force in what happens to us in this life than we'd like to admit, and that's a scary notion indeed. If the scales have tipped your way, and you're living a robust life filled with health, creativity and love, yes, you can pat yourself on the back to a certain extent for all of your hard work. But don't think for a minute that it all can't change in an instant through no fault of your own and you'll find yourself irrevocably changed. Be grateful and run with it, for when the tables turn, sometimes there really is no way back, and there's just no swallowing that pill. unless it's the kind that takes you out for good.

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  • What's It Like to Be Matthew McConaughey?

    Matthew McConaughey is living large these days in terms of critical acclaim. His HBO television series True Detective (which he co-produced with co-star Woody Harrelson), and films The Wolf of Wall Street and Dallas Buyers Club, are all getting rave reviews, something he says he wasn't necessarily shooting for but nevertheless has been the recipient of after deciding two years ago to forego romantic comedies and head in a more serious direction. He said he knew it would take some time to make the switch in his career, but as he was financially secure and prepared to wait it out, he really wasn't concerned.

    As I watched the supreme confidence with which he carried himself in this Sunday morning TV interview, I couldn't help but wonder what it's like to be Matthew McConaughey. He's obviously a very hard-working guy, and is also very talented, so no one would begrudge him his success. But there was something else going on during this fifteen-minute segment that made me uncomfortable, and it's been hard to put my finger on it.

    I'm wondering...am I simply envious of someone who's had this much luck in his life?

    Yes, I know he's worked tirelessly to get where he is, but I also had to marvel at the astounding amount of good fortune that's been heaped upon him. Here was this extraordinarily handsome man in the prime of his life, who not only is enjoying a critically acclaimed trifecta in his career, but who's also happily married and has three robustly healthy children.

    When he spoke of his decision to no longer do romantic comedies, he said he talked it over with his wife, as they'd have to brace themselves for a few years of him either not working or doing much smaller roles as he began the process of rebranding himself.

    I thought to myself...what's it like to have that be the biggest problem in your life? As he spoke, it was clearly evident that he had no doubt that his plan would work, which was incredible in and of itself, as who deals with decisions even close to that? "Honey, we're going to live on my millions for the next two years during this transition of me becoming a more serious dramatic actor, which I fully expect will happen. Is that okay with you?"

    When people live with such extraordinary luck, I suppose there's no reason to believe that it won't continue. He sports that slightly cocky confidence because this is what he knows in life; it's the hand he's been dealt. While he was somewhat irritating to watch, I can't hold his confidence against him, as he's no more responsible for his streak of luck than I am for living a life fraught with so many mean twists of fate.

    I suppose at the end of the day, it's what we do with these respective hands we've been dealt that matters, as trite as that may sound. Yes, I was slightly annoyed with him this morning, but I also can't wait to watch tonight's episode of True Detective, nor can I wait to see his films. The guy is gifted, and I respect this decision to take this more serious turn in his career. In fact, I wish he'd done it sooner.

    But I'm also feeling a slight malaise, as well, as so much effort can go into just getting through my day. On a good one, when the pain isn't as bad, I can flex my creativity, too, and ponder which new roads to take. But the bottom line, I think, is that sometimes I'm just profoundly struck by envy. It doesn't happen often, luckily, but there are moments when it comes into high relief just how much time and energy are devoured by the simple act of enduring. I cry easily on days like this, sometimes hard, which purges things, at least for awhile.

    I certainly don't wish Matthew McConaughey's life was any harder, as his gifts are gifts to us all. I just wish mine was easier.

  • Musings From the Brooding Aftermath

    A fellow member in my pain support group reached out to all of us recently as she was having one of those unbearable days. I went digging through my old blog, where I chronicled for three years my own journey with pain, in the hopes of finding something that might uplift her somehow. This post isn't particularly cheerful, but sometimes we don't need inspiration as much as connection. I sent it along and hope it helped. (I don't know her personally.) I'm reposting it here. (Original post date: November 6, 2009.

    ***************************************************** 

    Ever since I can remember, I've always questioned the meaning of life, even as a teenager, which back then made me think that I was insane...seriously. While all of my friends seemed to go about the daily business of boys, school, skin issues and just general life, I always had a type of tape loop going in the back of my brain, wondering why any of us were here, and wondering why everyone else wasn't wondering the same.

    Of course, I was also hiding my depression and OCD behavior back then, as well as the dark goings-on at home, so I'm sure that added to my questions about the meaning of it all.issues and just general life, I always had a type of tape loop going in the back of my brain, wondering why any of us were here, and wondering why everyone else wasn't wondering the same.

    But I was never able to just enjoy life with ease, as the plaguing questions about it seemed to thwart its pleasures. Don't get me wrong: I liked having fun, and had the detention notes to prove it. But there was this inner brooding during my teen years that could only be pierced by art, in any of its forms, and so my life-long love affair with music, painting, books and film began, as the artists in these fields were at least asking the same questions as I was, and in their work I could find a camaraderie of sorts.

    My first true encounter with art as enlightenment came as a double-whammy in nearly identical experiences. In each case, I was sitting in my living room, my face just a few feet from the TV screen, during two different family affairs where noise and conversation made me sit close to the set.

    The first film was Midnight Cowboy, and the second, The Graduate, the former being the more intense experience, as I recall.

    During those difficult days, there was little in my world that I could connect to, as I knew I didn't want the life my parents and relatives had chosen, as no one in my world seemed very happy. I thought something was just fundamentally wrong with marriage as an institution, as opposed to what was the real culprit: everyone's inability to say what they were really thinking and feeling. In hindsight, a life mate and kids might have been wonderful experiences for me, but in the kids department, I think it's fair to say that ship has sailed. I do hope some wonderful romance is in my future.

    That aside, I remember that by the end of Midnight Cowboy, I felt so moved, and perhaps for the first time, so connected to this strange earthly plane that beforehand had felt so meaningless. Here was a story about two people who felt so forsaken themselves, who had been cast off by society, living in their perspective dreamworlds that held little hope for anything more than what they could eek out on that particular day. They were outcasts, oddballs, losers and lost, just like me, no matter what my good grades, quick smile and bevy of friends might have suggested otherwise.

    Suddenly I realized that a whole other world existed out there than the one I lived in...a world where people not only thought about the greater questions of life, but actually created something from them that made us all feel just a little closer, if only through our compassion for these characters and their plight.


    Of course, The Graduate spoke loud and clear to me, as well, as what young person couldn't identify with Dustin Hoffman's Benjamin Braddock, who was also seeking something more meaningful than what the culture around him could offer. Even though his world was of the white collar variety (and mine, blue), the issues were universal, and I will be forever grateful to these filmmakers and screenwriters for doing whatever it took to get these stories to the screen.


    I suppose it's not surprising that as I was to go on to become a singer/songwriter, my songs would be so story-based. As some reviewers would observe, the songs wouldn't so much tell the story as to suggest it; the lyrics were the words going through the characters' heads in "the brooding aftermath" of what had just occurred, according to one (thank you, Linus Gelber).

    Of course, my music is behind me now, even though I still pick up the guitar now and then. Yet there seems to be some kind of curious irony happening that the questions I asked about life's meaning as a teenager are as profound as they ever were, only now the result of an untreatable pain condition. At its very core, the unfathomableness of this experience (and those like it) flies in the face of any argument that declares the human experience as one of destiny and inherent meaning.

    The one thing I can truly believe, though, the one thing that has been so sustaining this past year, is that while the experience of pain may indeed be meaningless, I can choose to give it meaning, when I'm able, by writing this blog.

    I've been gifted with the ability to write, to communicate, and while I haven't been able to muster up a single tune about this awful experience, I have been able to get it down here, to at least attempt an explanation of what it's like, if for no other reason than to give voice to an ordeal that has rendered too many mute, some permanently.

    This condition carries the awful nickname of "the suicide disease," as so many patients simply give up when they exhaust all avenues for relief; that's how bad it is.

    But there is something in me that feels compelled not to give in, to continue to be the private eye who will solve the case, if not to get out of pain, then to discover a means to gracefully weave it into my life, if that's even possible.

    It's as though I can't let my pain-mates down, which in many ways has been the thrust of so many of my creative pursuits over the years, even before I found myself in these particular dire straits. I must at least try to speak for us, and try even harder to solve the riddle of how to live when the unthinkable happens. I'm not sure if that earns me a gold star, or just an inflated ego for a short while as yet another coping mechanism that, like so many others, will ultimately give way under the weight and wear of all things relentless.

    I hurt so bad today, and I've got just one Vicodin left until tomorrow. And it's only 12:39 p.m. as I write this.

    Maddone.

    *********************************

    Artwork images are selections from my illustrated journal.

  • "Am I Good Enough?": Cracking the Creative Block

    I’ve been feeling so burnt out lately, so naturally I’ve been telling myself that I need a vacation, along with the usual chestnuts like “I’m working too hard,” “my efforts are outweighing my returns,” “I’m just not good enough at this”—this being my art, my business acumen, my general ability at simply living. Ah yes, it’s been a few weeks of this, which coupled with my increasing chronic jaw pain, has made for a bit of a rough start to summer. 

    But in slowing my brain down a bit, I think the truest bell ringing is in that last comment…”I’m just not good enough at this.” It became apparent when I sat down recently to do some new works and experienced the horror that strikes fear in the hearts of writers and artists everywhere...the monstrous blank page, and not a single inspired idea to fill it.

    I was actually surprised that this was occurring, as I'd been feeling just so READY to start painting again, after months of working on my shop to the exclusion of just about everything else.

    As I was feeling such left-brain burnout, I thought for sure the watercolors would come flowing out of me, so I sharpened the pencils, opened the paints, opened the watercolor tablet, and then…nothing. Oh, dear. No matter how many times I began a drawing, I just felt so dead inside.  I wasn’t inspired, I began to feel weary, and then the dreaded, “I’m not good enough” surfaced, bringing with it a detailed list of all my limitations, failures and insecurities. 

    But something just occurred to me in the past hour or so, which is that when I began painting in 1999, I could have cared less if my paintings were “good enough.” I’d look into my heart at what I was feeling, and I’d just let it come out through the brush. And that’s all there was to it. I was so excited by the discovery of this new art form—after so many years of making music—that this brush in my hand made a childlike glee burst forth from within. Even though the paintings were crudely done and technically inept, they resonated for people, and they actually sold, not because they were “good enough,” but because they were awkwardly honest, just like so many of the art lovers looking at them. 

    So here I am today, in terrible pain, feeling weary and so very insecure. Instead of beating myself up over it, why don’t I just paint it? Why does one have to feel happy or confident to begin a work of art? The other day I painted some cheerful birds, and they’re certainly cute, but they didn’t come from my core. They were more an exercise in color, which is certainly valid, but the real joy of painting comes from my communication of an experience. 

    Is this what’s at the heart of the matter today? I won’t know until I try, right? It’s time to do a drawing… 

    (P.S.  A second look at the “cute birds” painting, above, just moments ago made me smile, not because they’re cute, but because of what they unintentionally reveal.  They’re sitting on their respective branches with eyes closed, looking shut down, and it’s raining. So much for cheerfulness. The subconscious is always at work.)

     

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