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Chronic Pain
  • 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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  • Little Finds

    I just started a new junk journal--the kind filled with sketches, to-do lists, poems, whatever--and so was scrolling through my previous one, which is extremely thick and thus two years old.

    I stumbled upon an untitled poem that I most likely wrote for my friend Liz, who was going through a tough time. Liz is my homie on Etsy--a woman I never met in person or even talked to on the phone--yet in the last couple of years has become a deeply valued friend, as we've shared so much of our lives with one another in emails. Rarely a week goes by that we don't at least check in, sometimes just water-coolering about our Etsy sales, yet at other times talking about the most intimate details of our lives. She holds a hallowed place in my life these days...this soul out in Illinois who knows so much about me (and I her), yet who I've only seen in pictures.

    When I found this poem, I knew I'd written it for her, although I can't recall the circumstances. At first I thought it corny, then funny, then true.

    Untitled

    I will hold you until it’s over

    Listen ‘til the tears fade

    Hope for you when you can hope no more

    Dream for you a better day

    So cry, complain and fail

    I’ll lie on the ground with you

    We’ll point at the stars, at the gods and the saints

    And say, fuck you, and fuck you, too…

    Fuck you for all the suffering

    Fuck you for all the pain

    We’ll fill our cup with shits & giggles

    And let love pour down like rain

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    Written sometime in January 2015. c Mary Ann Farley.
  • Understanding Suicide

    Back in April of 2009, I posted the following blog entry about depression, titled "Understanding Suicide," on Salon's blog site. It eliclited a number of responses, mostly positive and compassionate, but there were some that still felt suicide was a "selfish" act, a stance that while understandable, I still find deeply troubling and incredibly frustrating. In the wake of Robin Williams' tragic suicide, I'll once again post this essay, only here on my own site, in the hopes of spreading the word that suicide is the fatal outcome of a disease called depression, not a morally corrupt choice.

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    During the past few weeks or so, I've noticed that on some mornings, I've been waking in a state of depression, which is a bit alarming as I know all too well just how devastating a full-blown clinical depression can be. 

    Obviously, I'm struggling deeply with the wear of chronic physical pain, and my brain chemistry is starting to give way, just like it did five years ago when an infection, which I thought had been cured two years earlier after 18 months of agony, took up residency in my jaw and face again (and has been there ever since). 

    As any hope for a cure seemed so hopeless back then, I slowly began to sink into a hole so black, so absolute, that all roads seemed to point to just one solution if I was ever going to get out of pain, and that solution was suicide. This led to a stint in the local hospital's psych ward, and then a few weeks later, admission to a psychiatric hospital.

    With all of the physical complications I've endured as a result of this blood disorder, frequently spending weeks in the hospital at a time, I can say with absolute certainty that nothing--nothing--is as painful as a major clinical depression. And nothing, it seems, is as misunderstood by so many, particularly when it's accompanied by suicidal ideation.

    For most people, suicide is unthinkable, so when a loved one takes his or her own life, we can get lost in a state of confusion and anger. I recall reading a book by a psychiatrist a few years ago who'd lost both of his sons in a 13-month period--one was a six-year-old who'd died of cancer and the other was a teenage boy who'd killed himself. 

    What was shocking, aside from the obvious tragedy of losing two children in such a short amount of time, was that the doctor talked little about his teenager, saying only that suicide was the ultimate "selfish" act, and he chose instead to write about his six-year-old, as the younger boy's ordeal was most likely easier to understand. The boy was, in a sense, an innocent victim of his disease, unlike his "selfish" brother who took his own life. 

    I remember feeling such shock that this esteemed psychiatrist, of all people, didn't understand the fatal power of depression.

    A few years ago, I was hired as a freelance medical editor for a few months, and I was lucky enough to edit tons of the latest materials about depression and suicide. Perhaps what's most misunderstood about clinical depression is that it's not just a state of malaise or of feeling blue; it's a medical disease that if left untreated will only worsen throughout one's lifetime.

    In the same way that Type II diabetics cannot absorb their own insulin, when clinical depression occurs, receptors in the brain close, and a person can no longer absorb their own serotonin, along with some other key chemicals. 

    Why this shutdown happens is still a mystery. Take, for example, a set of twins, both raised by the same parents in the same circumstances. In response to a tragedy, one twin will go through a normal grief period while the other will go into a major depression, and no one knows why. All that's known is that a person simply cannot function without these crucial brain chemicals, and the act of suicide is simply a way to get out of excruciating psychic pain.

    In my own case, before I got depressed, I was going through one of the happiest periods of my life. For years I'd worked to get myself to a place where I'd perfectly balanced my work life (freelance writing and editing) and my creative life (songwriting and painting), and felt more inspired and joyous than I had in years.

    This is what made the sudden return of chronic pain so devastating, and what ultimately made my receptors close to the very chemicals so necessary to live.

    It's hard to describe suicidal depression, but essentially, it's a loss of control over our own emotional state. Ordinarily, when one is down or feeling blue, there are things that can lift the spirit, like inspirational readings, listening to music, and talking with others. But when one is clinically depressed, absolutely nothing works to lift the darkness, and slowly the will to live can begin to erode.
    In the same way one in chronic pain can lose hope that anything will ever change, the depressed patient also loses hope for a cure, and a battle surfaces between our primal will to survive and an aching desire to no longer feel this hell on earth.

    In that sense, the act of suicide is the fatal outcome of a deadly disease, not a moral choice by the patient. Far from being selfish or cowardly, when a depressed patient reaches the decision to end his or her own life, nothing is more harrowing or frightening, because there's the realization that pain has overrode the fundamental desire to live. It's hard to imagine that anything in life could be that painful, but unfortunately, these states exist, and the last thing we should do is judge someone in this unthinkable quandary.

    In my own case, I knew that I'd reached the limits of my endurance five years ago when I awoke one morning and felt no love whatsoever for anyone in my life anymore (even my mom), as every emotion had become eclipsed by pain. I was shocked at this revelation, because I knew the things that had been keeping me alive--namely the desire to not hurt anyone in my family--were no longer operating. I intuitively knew that I had about 24 hours left to live, and so I called a suicide hotline, which in turn called an ambulance for me, even though my local hospital is just two blocks away.

    That's how bad I was; I couldn't even walk this short distance, as every ounce of energy was going into just staying alive and not swallowing the bottle of pills that offered permanent relief.

    In time (four agonizing weeks or so), the antidepressants began to work, but not everyone is so lucky, particularly those who've struggled with depression repeatedly in their lives. Studies have shown that clinical depression actually damages the brain, and if left untreated, the illness only gets worse throughout one's lifetime. As the years roll by, the depressions become more frequent, more severe, and require less stimulus to set them off. That's why intervention with medication as soon as possible is so paramount to healing.

    Studies have also shown that antidepressants can actually have a curative effect, meaning that if the first depression is treated with medication and therapy, the likelihood of it happening again decreases sharply.

    Of course, there are those patients who use a suicide attempt as a cry for help, or as a means to get attention, and some of them do end up dying. But for the patient who is suffering from severe and extended clinical depression, suicide is nothing more than a way out of a type of pain that can never really be put into words.

    I've heard it said that suicide is "a permanent solution to a temporary problem," but this isn't quite accurate, at least in terms of a major clinical depression. For some, the problem is debilitating and lifelong, and for these patients, suicide is the means to finally rest, even at the cost of life itself.

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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.

  • I Didn't Win the Lottery, But It's Close!

    Boy, ya never know what's around the corner. A few weeks ago, I received a few notifications all at once from a woman named Jennifer, who said she was interested in buying a huge amount of my art on behalf of a pharmaceutical company, who would then like to exhbit said art in New Orleans in December at the National Hematology Convention, with me in attendance.

    Huh?

    My knee-jerk reaction was that she was an art scammer, as these diabolical people often approach you by name and even know the names of your artworks. But then it hit me--how would a scammer also know that I had a serious blood clotting disorder?

    It turns out Jennifer was real, and there was even more to the story. The company, Incyte, also wanted me to attend a breakfast in Times Square on Sept. 3, where I would be part of the ringing the NASDAQ bell to kick off Blood Cancer Awareness Month. Not only did they buy two of my prints to exhibit at the breakfast that morning (at the Intercontinental Hotel, no less), but they also sent a car to drive me to and from the event!

    And to put the cherry on top, for a few brief seconds, my smiling mug loomed over Times Square on the NASDAQ jumbotron during a series of photos taken during the ceremony just moments prior. Everything about that morning defined the very essence of the word delightful.

    But I'd be lying if I said I also didn't feel a slight discomfort about it all, as the bottom-line reason for my involvement was because of my illness, thus making it a bit more real to me than it already is. Believe me...this pain is real, as I live with it every second of every day, but there's also a small part of me that lives in denial that I'm a sick person. I'm not quite sure what I mean by that, as this pain rules just about every aspect of my life, and I've been quite open about it, both in my art and in my writing. I guess it's just hard to admit that it's now become woven into the very fabric of who I am, which on the one hand is a good thing, as it means I've accepted it, but it also brings up the latent anger that's always just beneath the surface, as it's something that has been thrust upon me. I did not choose to get sick or to be chronically in pain, nor would I ever have wanted this to be the way that my work would gain any kind of attention.

    When I saw my face up there on the NASDAQ jumbotron, it was certainly a wonderful kick, but it could not have been any bigger of a reminder of the enormous role this illness now plays in my life. It has become part of my identity, as proven by my looming presence over Times Square for those few moments on Sept. 3.

    While standing there, I couldn't quite understand why I was feeling tears well up in my eyes, but now I know. This illness is real, and it's a permanent part of me now. God willing, the upcoming Oct. 2 surgery on my jaw will help ease this terrible pain, if not rid me of it entirely, as it's been with me for over ten years now. A decade is a big chunk of a person's life. While I'm thrilled to be a part of this whole New Orleans extravaganza, how much MORE wonderful it would be if I attended it pain-free. Should that come to pass, I do believe my smile could once again light up Times Square, only this time without the use of a jumbotron.

  • I Seem to Have Misplaced My Life

    This is a repost of a Salon blog essay written in May 2011, just a few months before I was to relaunch my Etsy shop, which has since been an explosion in creativity. I probably needed to grieve in this essay for who I had been before I could move on to who I would become. As Lady Gaga is rumored to be coming out with a new disc very soon, it's interesting to revisit what I was feeling just over two years ago.

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    Lady Gaga is everywhere. When I scan the channels there she is--in yet another interview, another video, another performance, another commercial. And I admit, I can't get enough of it.

    But while I'm enjoying the ride, there's a lingering malaise that's sitting in the pit of my stomach like an undigested dessert, and I'm getting a tummyache.

    It's strange listening to Gaga, because her music has reignited a love of pop that I haven't felt in a long time, and I feel something like a teenager again, when music was the sustenance of my existence. But here's the rub: I'm not a teenager anymore--far from it, in fact--and all that went with my love of music in those days is long gone.

    For example, when I listened to pop music as a young person, it stoked the dreams of me doing that myself one day, and so much of what I chose to do was put towards making those dreams a reality. As a kid, I dutifully took my music lessons, and as I got older, I joined bands, developed my songwriting and performing abilities, put my own band together, and hit the road. I recorded and released two CDs, was a critics' darling, and came close to publishing and record label deals, which always ended up falling through.

    Undeterred, I kept at it, but as the years began to pass, an eerie feeling soon emerged, which was this: If my dreams don't come true, if I don't end up a truly professional singer/songwriter (who no longer needs the day job), then what will happen to me? Who will I be without my dreams, or worse, without those dreams fulfilled?

    For years, even decades, I didn't allow those worries in, because like any good young person, I thought I would live forever. And I believed, perhaps naively, that provided my heart was in my work, as long as I didn’t sell out, then everything would turn out fine. There was nothing to be concerned about. I worked hard, my music was good, and I was committed. What could go wrong?

    Well, what went wrong far exceeded anything that I could have imagined in my wildest dreams, as my health, which was never very good in the first place, took a dive in 2004 that brought me to a full stop. And just like that, it was all over.

    While I’ve pursued other creative interests during this time, like writing and painting, and even dance for awhile, music will always be my first love as songwriting is what I do best. But when I became so ill and was racked with such unrelenting pain, there just wasn’t anything to write about anymore, and I knew I was done for a very very long time, maybe for good.

    Whether it was creative exhaustion or the inability to put physical suffering into a song lyric (or a combination of both), I knew that my music days, for the most part, were behind me, but I was just too sick at the time to grieve over it, as most of the time, I was just trying to stay alive.

    But in the last few months, I’ve noticed that my spirits have picked up, which has led me to picking up my guitar again, right around the same time Lady Gaga began promoting the release of her new disc. While her songs inspire me so, I painfully realize that I’m no longer the teenager who can fantasize that I’ll be like her one day. And frankly, I don’t know what to do with these feelings.

    In short, I feel like crying all the time it seems, despite my rebounding spirits, because the days of dreaming about a music career are over. Let’s face it: No record company is looking to hire a 52-year-old pop star.

    Some have suggested that I get back into the game as simply a songwriter, but even that takes money (to record demos), hence the realization of another grim reality: I’m flat broke. This illness has wiped me out so completely that I live in a Section 8 HUD apartment, am on Social Security disability, and am in chronic pain most of the time. This is NOT how I expected my life to turn out.

    So when I see Lady Gaga in all her glory, talking about how she “stuck to it” to achieve her dreams, I think of the millions and millions of other aspiring performers who also gave it their all, sometimes for their entire lives, and have ended up with absolutely nothing, other than some wonderful songs that no one knows or cares about.

    On a positive note, I’m so skilled as a songwriter that I no longer have to hone my craft for a lifetime in order to pen a tune. Instead of dreaming about it, I can pick up the guitar or sit at the piano and just do it, provided the inspiration is there, which is a BIG proviso, by the way. Without inspiration, I’m no better than a no-talent hack with nothing to say.

    But the negative note seems to be ruling the day, it seems, for at least this day. I just heard a passing car blasting Gaga’s “The Edge of Glory,” which is an edge I sat on for a very long time. The scales just never tipped my way, and there’s a giant ache now where my dreams used to be.

    Maybe it’s time to grieve for them, as I gave up everything to have them…marriage, children, and careers in other fields. I went for it 100 percent without a net, and now I’m splat on the ground after having fallen off the wire.

    I don’t regret it—not a bit. But I feel just so so sad.

     

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  • "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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