Thursday, December 17, 2009

This Is It

I’ve always been the fix-it gal. Since an early age, I thought that if I just said the right thing, did the right thing, talked and walked the right way, then I could control the people around me. Growing up, obviously the first two people I tried to fix were my parents.

If I could tread just lightly enough, maybe my father wouldn’t be so mad, and if I said the right soothing words, maybe my mom wouldn’t be so sad. If I could just fix their rage and depression, respectively, by somehow fixing me, then everything would be fine.

I also tried to make everything right for my sister, my only sibling, who was born when I was 16. As I had such a voiceless childhood, I made sure she could express her voice to me so that she didn’t feel as alone as I did growing up.

So this was how I identified my value--the service I could be to others, so at various times throughout my life, I played out these dramas over and over, with friends or with men who were either way too angry or way too needy.

Of course, I harbored those very emotions in myself, which I didn’t see, naturally. It would take me years to understand why I’d picked the men I had, realizing that my criticisms of them “loving” me out of need, not true emotion, were really my own faults being reflected back at me.

I certainly did my time on the therapeutic couch to sort out my complexities, and I must say, the friends I have in my life today are gifts from heaven. (Unfortunately, I've yet to find the right man.) I realize that none of has to fix each other; we just have to bear witness to one another’s lives, be the moments good ones or bad, as the joy is found in the shared journey.

Yet somewhere deep inside, I can’t help but feel the fix-it gal still rearing her shaved head every now and then, still trying to fix the world around her, and I think I even do it to some extent with this blog, where I write not just to express myself, but in the hopes that I can somehow “fix” others in pain as well, so that we all can go on to live a happy existence. Surely that would make some sense out of all this agony, and by extension, make the world a much safer and more meaningful place for us all, particularly me.

Yet in my efforts to make my world safe and calm, I’ve somehow ended up in a life that is anything but. And in my last blog post, when I felt that I’d reached the end, that finally the pain had defeated me, it was proof once and for all that the world is filled with dark voids and treacherous turns that can never be predicted, never made safer by any amount of prayer, faith or fixing.

Perhaps the scariest realization I’ve come to is that for some, the old cliché of “this, too, shall pass” just isn’t true, nor are any of those other endearing chestnuts, like, “God doesn’t give you anything more than you can’t handle.” Wanna bet?

So it was such a disappointment for me to write that post, as I felt I’d failed not just me, but also everyone else.

But curiously, my words were not read that way at all, and some even found me brave, which took me by surprise. Out of the void of the unthinkable came voices from all over…from Open Salon, from Blogger, from strangers stumbling upon my site, from subscribers to my blog who I didn’t know existed.

Two people wrote of their own excruciating pain journeys. Another wrote about losing her 17-year-old daughter last year to brain cancer. Another, a friend, came over to say a prayer service with me, doing a unique Christian ritual practiced in Central America. And another pal called from Santa Barbara after, which ended up in two-hour joyful conversation that “closed the place down,” as she said, as our marathon phone chat had completely depleted my battery.

And then there was the friend, another blog follower I didn’t know about, who worked with me about 25 years ago during our days as young newspaper reporters, saying sweet things about me that I had no idea were a part of my character back then. His words were kind, loving and open, and I was so moved by his attempt to make me feel just a little bit better (which he did).

I went back to re-read my post at one point, thinking that maybe it was more inspirational than I'd thought, but no--it was pretty damn bleak no matter how you read it, so I was more than startled that anyone found that post of any value whatsoever.

And then it occurred to me. To a woman who’s been fixing things all her life in order to feel worthy and safe, here was a situation where not only was I not fixing anything, I was actually dropping the ball, perhaps even permanently, yet somehow this seemed to help others, to my complete consternation.

I am SO programmed on some deep dark level to anticipate criticism, that when I hit the send button on that last post, I almost braced myself for the harsh words I was anticipating in return.

To have gotten responses so completely different on the one hand seems obvious (why would anyone be cruel to someone who was in so much pain that she was thinking of ending her life?), yet it shook my foundation, sandy one that it is. Clearly, after all that therapy, my dad’s voice in my head can still shout loud and clear in my most vulnerable moments.

And so I furrow my brow now in complete befuddlement, realizing that what humans really want from each other isn’t perfection, isn’t an answer, but an honest connection, so in that sense, my last post must have been far more sponge-worthy than I realized, ‘cause it surely doesn’t get much deeper or honest than that.

Our world is so polarized into extreme segments these days…politically, technologically and spiritually, that I suppose personal honesty is the one realm where we all can find common ground, no matter how muddy or dark that ground may be at the time.

Honesty. That’s all we ever really want or need. Of course, I want and need a pain-free face, too, but I may have to keep up my attempts at acceptance, realizing that maybe this is it and it’s the best it will ever be.

Hmmm--this is it. God, I hope not, but I vow to at least continue to be honest about what this ordeal is doing to me, be it good or bad, for the connections I’ve made as a result of it are a blessing indeed, as are the lessons about love that are changing me at my core.


Sunday, November 22, 2009


Today the pain is relentless and over the top. I just got off the phone with my friend Anne and I was sobbing. I said the truth that I've been thinking of for awhile now, which is that I don't want to live this way anymore. It's not that I don't want to live; I don't want to live like this.

Too many days are spent lying on the couch, never even getting out of my pajamas.

The last few mornings, I've been overcome with sleepiness, despite this new diet, which I'd been hoping would help, but it obviously isn't doing much. I felt an initial burst of energy, but my state has dissolved into a type of strange slumber. I've been buying healthy foods, cooking good meals, getting enough sleep, going to the gym a few times a week, but what's it all for when I only end up back at square one? Why bother when life is merely surviving and not living?

This afternoon I spent a few hours on the web, looking for other surgeons in the country who've perhaps had more success in treating this condition than the ones I've been to, but I don't see how they're any different.

I also found my way back to an old support group list, which I'd forgotten about. Apparently, I was there eight months ago, hoping to find help, just like hundreds of others from around the world who feel somewhat better after surgery, only to decline back into a diseased state. It was strange to see my name and read my words, realizing that nothing has really changed since then. I did have another surgery during this time, but the pain left me for just a few days before it came throbbing back.

It's an unbearable existence.

I saw Richard Branson on TV today and was reminded that just before all this started, I was planning to take flying lessons, not so much to learn how to fly, but to do a funny photo essay of the experience. I'd even bought an aviator cap and goggles, and had storyboarded the goofy adventure, hoping I'd have funny teachers who'd be willing to join in on the fun. I even had the airport and flight school picked out.

But that's all behind me now. And the cruel truth is that, despite all of my explorations into the meaning of suffering, chronic pain is meaningless. I simply drew a bad card in life, and it's not much more complicated than that.

I began writing this blog to give meaning to this experience, but I'm finding that, despite my best hopes and efforts, I'm not going to write my way out of this. My hope was that through my writing, I could help others, and of course, myself. I was praying that if I could find a path out of this mess, I could maybe provide hope for those laboring through their own unthinkable existence. But I see now that there is no way out. This is what it is, and judging from my research and my experience, it's not going to change.

And so I have to I want to live this way for the remaining 25 or 30 years of my life? What's the point? Five years ago, my depression over this landed me in a psychiatric hospital as I was suicidal. But the feelings I have now aren't so much based upon depression but rather on a logical conclusion that this is just no way to live.

When I've had thoughts like this before, my nieces would immediately come into my mind, and what I would be taking from them if I were no longer here. I'm the only aunt they have, and as my own aunts were so important to me growing up, I know that if they didn't have me in their lives, they would be the less for it.

But my thinking has shifted tonight. They're young; Sarah has just turned three, and Catherine will be five in January. Their parents are wonderful, and with or without me, I know they'll be okay. It would be a shock for everyone if I were to end my suffering, but my family and friends all know what I've been through. I'm sure they would forgive me. Yes, there would be anger, but not at me, I don't think. They would simply feel sad that such suffering could take out such a vibrant person...a person they loved.

That's all I have tonight. I don't know that there will be any more posts to write, no matter what decision I make. This blog has been an 18-month experiment, to see if it could somehow help, but I think I've reached the end.

I'm tired and in agony. And I can't stop crying.

This is no way to live.


Sunday, November 15, 2009

Results of My Relativity Experiment

In my last post, I said that if all things really are relative, then the truths I learned about emotional health during my years in therapy should at least have some application to healing my physical state, which is one of chronic pain.

So I decided to do a five-day diet of all healthy stuff, along with removing caffeine, nicotine, alcohol and sugar (which I've learned is actually the hypoglycemic diet; weird that I discovered that on my own).

Here are the results:

Came home from my early-morning colonoscopy and had yogurt and granola. Later made a shake of yogurt, soy milk, bananas, raw almonds, protein powder and a touch of real maple syrup. For dinner had edamame and hummus with that Indian pan bread (I forget the name). For dessert had the rest of the shake I'd made earlier.

Cheats: Had a little wine (less than half a glass) before dinner with about three drags of a cigarette.

Observations: None, other than I think I picked up a cold at the hospital. I feel one coming on.

Made the same protein shake as above for breakfast. For lunch had apple slices smeared with peanut butter. For dinner, had a Sunshine Burger (made primarily from sunflower seeds) on a whole wheat roll and red leaf lettuce (dipped in Paul Newman's Low Fat Sesame Ginger salad dressing--that stuff is SO DELICIOUS. What's the catch?). On the side had a soup of chicken broth with freshly-shopped celery and onions.

Cheats: At 2 p.m. made myself some coffee to remove the meat cleaver wedged into my skull. Just a few sips got rid of the headache. After dinner had a few sips of wine (then dumped the glass) and had a cigarette. That was dumb. It made me feel sick after that great dinner, and actually piqued my pain a bit.

Observations: Without the "schedule" of my usual vices, I felt a bit lost this morning, especially since I had a lot more energy than usual, only didn't know what to do with it. So I did laundry, vacuumed the apartment, and started a painting. Ordinarily, these things would take a lot of effort to set into motion, but they felt relatively easy to do. This surprised me.

This cold is getting worse.

Had the same protein shake for breakfast, and the same lunch of half an apple and peanut butter for lunch. For dinner had a salad, sunshine burger (sans roll) and an ear of sweet corn. For dessert, had decaf tea and small cup of chocolate chip ice cream. Snacks during day included sunflower seeds, granola and dried banana chips.

Cheats: Had a few sips of coffee in late morning with a cigarette; had an aperitif glass of wine and cig before dinner. The less these things are in my diet, the more poisonous they feel when I take them into my body, especially the coffee. Interesting.

Observations: Hard to tell what's happening as this cold is pretty bad. Just my luck to get sick when I'm' doing a health diet. Interesting visit to hematologist this morning, though. My platelets, which had been way over a million last week came down by half. WTF? My platelet counts can be wacky, though, so I'll consider this a coincidence for now.

Smoothie for breakfast; yogurt with granola, along with egg salad on Triscuits for lunch; soup, salad and ear of corn for dinner; decaf tea and cup of ice cream for dessert. Same snacks as yesterday.

Cheats: Same as yesterday.

Observations: Even with the cold, had considerably more energy today. Went to the gym, then to the avenue with the granny shopping cart to buy box of clementines and bag of apples, along with some other sundries. Stopped at copy shop to make fliers for a volunteer group I work for. Then came home and began sorting out all of the art stuff I've brought home from my studio, finding room for everything. Was nice to talk to so many people today. I'm in a great mood!

That's today. It's 11:30 a.m., and I'm completely exhausted. Had a smoothie for breakfast, but I feel like someone's pulled the plug on my life force. Had a few sips of coffee and half a cigarette to wake me up, but I'm still tired. Just made a cup of tea. I'll be heading out this afternoon to do an overnight babysit of my nieces, ages two and four, so I better find some energy from somewhere! They always expect a good show. Diet will go out the window once I get there, as we're ordering pizza for dinner.

Pain has been fairly steady, and I'm still on pain medication, but there were moments these past few days where the boost of energy made the pain more bearable. I may have overdid the activities yesterday, though, as this morning I'm completely slammed.

I'm going to continue with the diet, as it really hasn't been that hard. What's been the most difficult is what to do with the time and emotions I have when I'm not drinking coffee all morning and smoking.

It's clear that my vices are my escapes not just from the pain, but from the fear and loneliness this condition has brought on. It's hard to face just how let down I feel, still, by the pain, after having devoted my entire adult life to healing my emotional state. There's a cruel irony to it, but I suspect that if I can feel a streak of sustained energy, I'll start to have some confidence in getting my life back.

This energy crash today is a bit of a blow, but I'm not done with the experiment yet. I'll do another five days and report back.


Tuesday, November 10, 2009

That Lovely Ring of Truth

While shaving my head a few minutes ago (when's the last time you heard a woman say that?), I thought about my old therapist, for some reason. A couple of months ago, her daughter had called to tell me that she'd finally passed away of Alzheimer's.

I was a patient of this woman for about 18 years, right up until I could see that something was terribly amiss in her behavior about 10 years ago. I believe I've told my story about her here (I can't even remember my own posts anymore), but it isn't important in terms of my thoughts about her this morning.

It was her courage and fearlessness that popped into my mind, and how she taught me over the years to never really fear what was in my heart, no matter how dark it felt at any given moment.

No matter how distraught I could get over things in my life--past, present or future--MH always helped me face my fears head-on, particularly the ones I could have about my own sanity.

She seemed to embody a fundamental truth about life, which is that in the realm of emotions, there is nothing so dark that can't be faced, as when a truth is spoken, you truly are set free.

In that moment, one realizes that the agonizing torment of a particular situation doesn't really need a resolution at all, as when that spark of enlightenment, of insight, occurs, all things really do feel right again. For me, faith wasn't just restored; it was perhaps born for the first time--faith in the therapeutic process, faith in a power greater than myself, and faith--true faith--in another human being.

This was the wondrous feeling I'd so often get while driving home after a session. Never would I feel so relaxed, so at home in the world, as when I'd leave her office after an incredibly intense and satisfying therapeutic exchange. It was such a comfort, and so empowering, to feel that I no longer needed to cower, to appease, to ruminate, or to obsess in order to feel safe in a dangerous world. As time went by and my true self began to emerge (I actually began playing guitar and writing songs at age 35), it was as though an inner garden had sprung to life, and I was embarking at last on the journey of my becoming.

But then I was stricken with such pain and illness in '99 (at age 40). Everything I thought I knew shattered into a million pieces, and shattered even more in '05, when the pain took up round-the-clock surveillance of my soul, seeing just how much pressure it could exert before I cracked. It didn't take long.

So now I'm left wondering: All those strides I'd made with MH, all the new beliefs I'd developed, all the faith that lit my spirit, all the magic I'd feel from those mysterious "helping hands" that seemed to bring me exactly what I needed when I needed it...where did it all go?

Did these things just happen in my imagination? Did I really learn any fundamental truths at all? Yes, dark demons did get chased away by my courage and by my newfound faith in MH's therapeutic process and in a larger force at work in my life. But as I looked in the mirror at my new closely clipped head this morning, I wondered: Why can't I get rid of the demons now?

I suppose the world feels far more random to me these days, and far more unfair than I ever could have imagined. Still, if all things really are relative (another leap of faith), then surely there must be something I could apply to my physical state right now from the lessons I learned so many years ago about what restores health in the emotional realm.

OK, so when I stared down a fear, when I spoke the truth--no matter how painful that uttering might have been--something would give way, and a little bit of health would return effortlessly. Restoring my sanity didn't happen overnight, of course, but each step was built on a solid foundation, which provided sturdy and steady ground for what was to come next.

If indeed I'm on the right track with this line of thinking, what "physical" truth am I not facing right now? Well, for one thing, I suppose I've given up on taking care of myself. As the constant pain has worn my sense of hope down to a tiny nub, lighting that next cigarette, drinking that next cup of coffee (loaded with sugar, 'natch), or sipping that little bit of wine (not to mention popping the painkillers) has begun to feel like the only way I can feel just a tiny bit good again, if only for a minute.

But these things are bad for me (no matter how "moderate" I may or may not be), just like the lies I believed about myself so long ago. I can see now how much foul food was fed to my soul, so to speak, during my childhood, and when I purged it, my mental health seemed to take care of itself.

So I'm going to do an experiment. Tomorrow I'll be having a colonoscopy, which requires a liquid diet of me today. I have to go to the store to stock up anyway on juice and broth, so while I'm there, I'm going to pick up tons of fresh fruits and many as I can carry...and practice a modified vegetarian/vegan diet for the next five days.

Not only will I remove caffeine, nicotine, alcohol and processed sugars from my plate, but I will add in things I don't usually eat, like fruit smoothies in the morning (with a scoop of whey protein).

If I say I'll do it for a week, I'll freak out, so let's keep it to five days.

I read an old acronym recently, using the word CARE, meaning circulation, assimilation, recreation and elimination...the four things we need to pay attention to in order to be healthy.

If I'm not giving my body the fundamental "truths" it needs to heal itself in these four areas, then how can I expect to ever get out of pain?

Of course, no amount of nutrition is going to cure my bone marrow disease or bring down my high platelet count (I don't think so, but who knows?), but I have to believe that I can at least purge a resistant infection, or cool down the wiring of wayward nerves with proper nutritional attention.

As my pal Tom mentioned this morning, "Action is always the answer," which had that lovely ring of truth. I could ruminate to death on the "meaning" of all this crap, inherent or otherwise, but at the end of the day, if it's to happen at all, it's action that will get me out of pain...something that will happen as a result of something I DO.

I will start this new eating plan tomorrow. I'll post results as they develop.


Note: Pictures are random selections from my illustrated journal. They have nothing whatsoever to do with this essay. :)


Friday, November 06, 2009

Musings from the Brooding Aftermath

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.

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. (I'm investigating all of the many ideas so many of you sent in your comments...thank you!)

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.


Some kind readers have asked about my music. Full streaming songs can be heard for free here:

Paintings are watercolors from my illustrated journal.

And Linus Gelber's full review is here:
A sampling: "There are stories in her music, but they are private ones; her characters show but don't tell. We meet them instead in their pondering aftermaths, musing brokenly about what has gone before and how it got them here."


Monday, November 02, 2009

Pills For Enlightenment

It would seem impossible that I could live a life without painkillers at this moment. This morning was a bad one that required one morphine pill, a Xanax and three Vicodins to get the pain to a somewhat bearable level, but I can no longer stand what these medications are doing to my spirit.

As I felt the pain battle for supremacy in my face and jaw (despite the meds), I decided to just lay on the couch at one point and give in, to not fight, to boldly tell it to get as bad as it wants to get--that I can take it.

It's always remarkably relaxing when I do this, as I suppose in these moments I can compartmentalize the pain, set it aside, and live with it instead of fighting it. But for some reason, I seem to do this only when I arrive at the point where I'm realizing it's winning handsomely, and the only way to win the war, so to speak, is to surrender the battle.

When I do this, the pain does ease up somewhat, and I wondered this morning if this tactic would be successful if I went off pain medication altogether. It seemed like such a shockingly bold move, even stupid, but the idea intrigued me.

Yet when I significantly decreased my pain meds in an experiment last week, the pain skyrocketed, and it took two days to get it down again. It's actually been pretty bad ever since.

But I literally can't stand this medication fog anymore. As I've been so isolated and sedentary for most of the past year, I joined a gym this week, and man, what an effort not only to exercise, but just to walk over there! My malaise fought me every inch of the way, and the depressing thought kept creeping in, "Why am I bothering?"

What's keeping my hope afloat, though, are the memories of more joyous times, when, despite my problems and issues, life could also feel electric and exciting, and I would be wildly filled with creative ideas that gave me more than enough fuel to execute them.

But my days are so very different now. And I have to wonder how they fit into the overall pattern of success/defeat defeat that has defined so much of my life. If everything around us is truly connected by some kind of universal web, where past, present and future are illusions of our three-dimensional world, and if I go on the assumption that I'm here on this earthly plane to learn deep truths via the gift of free choice, then what is the lesson?

Of course, my malady may be nothing more than a freak occurrence of bad luck, but for the sake of argument, if this ordeal does somehow reflect a bigger picture, what in that picture am I missing?

When I think along these lines (which always seem to effortlessly surface during these moments of surrender), it all feels so profoundly obvious to me--that of course this is all connected, you numnut, but you just don't want to go there. You don't want to face the sheer terror of the wild blue yonder before you, and instead would prefer to stay in your hovel of pain and medication, where the space is oh so small, but oh so familiar.

As I've written about before, most of my adult life was devoted to music, to being the best singer/songwriter I could be. Those were heady times indeed, but when one is so singularly focused on JUST ONE THING in life and that thing no longer exists, it's hard to feel anchored to the earth anymore, despite my other artistic endeavors.

And why was my life devoted to JUST ONE THING? Because I felt so incapable of succeeding in love relationships. Time after time, I made such poor choices in men, which had less to do with them and more to do with my low self-esteem. And let's face it...a life without love, or even the potential for love, is hardly a life at all. I dare say my fear of intimacy borders on something pathological, and I am the less for it.

Of course, now that I'm so ill, in such pain and on so many medications, I continue to feel myself unworthy of a love relationship, but of course this is just more of my bullshit. I'm aware that I'm actually quite good (for the most part) at handling extremely difficult physical conditions, and I'm also aware that no one is perfect; that we all have our proverbial crosses to bear and baggage to unload. Pain and illness does not deem me unlovable, but in my own mind, it gives me an excuse to melodramatically retreat, which is made all the easier by the fatigue created by the meds.

It's a vicious cycle indeed. Pain and fatigue keep me isolated, yet isolation keeps me away from any possibility of love, which would restore much-needed balance in my life, whether the pain was there or not.

It's certainly no easy thing to wake up with severe pain in the morning, and would be harder still to take a stab at not medicating it, but something has got to give. I've become frozen in time, remembering the person I used to be, yet only vaguely seeing the person I could become. And therein, perhaps, lies the rub.

With all previous definitions of myself shattered, who am I now, and who do I want to be? Where do I go from here? I can't see it, and this terrifies me, frankly. And with pain taking up so much real estate in my brain, it's difficult to formulate a new vision for myself or for anything...even some nutty creative endeavor.

Before all this happened, I was actually feeling okay about setting the music aside for awhile, by exploring new paths, by venturing forward full speed ahead in faith and love.

But of course, my faith was shattered, too, when pain exploded onto the scene. God not only vacated his co-pilot seat in my life; he actually hit the ejector button, leaving me to crash land in some foreign sea all on my own. I've been trying hard ever since not to drown.

And so my present is now largely defined by reruns of Criminal Minds. Nothing soothes the tortured soul, it seems, like stories of sociopathic serial killers.

I watched a preacher today during a Sunday morning TV program, and he talked about faith, about putting our troubles in God's hands. He focused mainly on the recession and the joblessness that many of his followers were no doubt experiencing, noting Bible passages that basically said to quit worrying, have faith that God will provide, and just enjoy your life.

When it comes to money and my freelance work, I can get with that. But how those parables apply to someone in chronic pain still has me stumped. Maybe they don't apply, or can't. Once again, I'm reminded of Buddhist teachings that say there will always be suffering in life; the trick is to rise above it (no matter how harsh the circumstances), relinquish your attachments, and enjoy the bliss that ensues.

But I'm told by this one Buddhist sect that I'll have to chant two to three hours a day to attain this enlightenment. Huh? What? Is this a joke? I get impatient with how long it takes to walk to my kitchen. Can't they just make a pill for it?

Note: Watercolors are some new entries in my illustrated journal. I'm using them as inspiration to get back to my flamenco classes!


Wednesday, October 21, 2009

"Gurney" (new song lyrics)

I'm a loser
The Lotto ticket says
I'm a bruiser
Veins are running red
Like a river
Flowing to the sea of redemption
Flowing back to me

I'm a bleeder
The gurney and the lights
I'm a cheater
Saved again in spite
Of the sorrow
Tears are running red
Like a river
Flowing from my head

And I say...
Strike up another number
Pick Six and let it fly
Strike up a new tomorrow
A new chance to get it right
Strike back and up the ante
Bet on infinity
Slap me down and strap me on
My gurney to the sea

I'm a seeker
The Lotto ticket says
A believer
Veins are running red
Like a river
Feeding all the trees
I'm a bleeder
Me and all the leaves

And I say...
Strike up another number
Straight/box and let it fly
Strike up a new tomorrow
A new chance to get it right
Strike back and up and ante
Bet on eternity
Slap me down and strap me on
My gurney to the sea

c2009 Mary Ann Farley


Sunday, October 11, 2009

The Healing Power of Honesty

Well, Open Salon has done it again. In my darkest hour, I poured my heart out in a post, feeling somewhat guilty for expressing such a bleak mood concerning the bleak circumstances of my life, yet instead of chastisement (which at this stage of my life I still fear), OSers opened their hearts in ways that completely caught me off guard.

And quite simply, things changed.

I suppose the change was set in motion a few days earlier when I was drawing and writing in my illustrated journal (as opposed to my reflective journal, where I write multiple pages at a time). In an effort to break the logjam of isolation, I began doing some illustrations accompanied by scribbled thoughts inspired by the image, yet instead of it being a satisfying exercise as it had always been, it felt empty and boring.

It wasn't until the sixth entry of this new Moleskine journal that I realized what the problem was: I hadn't been honest in the previous five, and when I began to write from my center, when I acknowledged that things had taken a bad turn pain-wise, the satisfaction returned, and momentum began anew with hardly any effort at all.

Of course, there was a certain amount of effort in taking up the pen and paint, but it was a small one, and one I enjoy, regardless of the satisfaction level. What I love about these little sketches is that I always learn something, even if the drawing is a monumental failure, so the effort is never wasted.

These drawings and written thoughts led me directly to an enlightenment of sorts, and that, in turn, led me to a new blog post, where I simply poured my heart out, setting aside what others might think. It all flowed out of me in a single sitting, and when I clicked "publish," I just sent it out to the universe, response be damned, and once again, I wasn't disappointed.

The comments I received helped in so many ways. Some people simply posted their compassion, while others offered more hard-core suggestions, all of which were concrete things I could try. No matter how short or long the response, I suddenly didn't feel so alone, and I connected with others on a level I don't come across in my day to day life.

This boost from so many open hearts filled me with a much-needed and newfound energy that I hadn't felt since the new round of pain started over a month ago, and little breakthroughs began happening all over the place. One thing I realized is that I need to give up my art studio and bring everything home. For a few years, I've been struggling with the realization that I no longer have the energy to get there, nor can I afford it, yet giving it up felt like a failure to me. It would have been the period at the end of the sentence that my life has drastically changed these past five years, that I no longer can physically do the things I've always done.

Yet in accepting this fact, I can see all the good that will come of it. In having all of my art materials here at home, I will most likely paint more, not less (which has been my fear), and I'll have some extra cash in my bank account to boot, which I so desperately need. I've been spending a few thousand dollars a year to keep my studio, but it's become more of a storage place than a place of creativity, as when I go there, my isolation seems to feel more intense. Some studio mates have moved out due to their own financial issues, and it's just not the same place it used to be. And so it is time that I make my own changes.

Another astounding, even life-changing, insight was that this strange malaise actually began when I went on the Percocet in early September. While I definitely needed something to curtail the breakthrough pain, I suddenly realized that perhaps Percocet wasn't the answer, as for some, it does indeed cause depression. And in my case, when depression increases, so does the pain, so I found myself in a loop of pain, depression and pills.

To have this light bulb go off above my head was akin to an angel whispering in my ear, so my doctor changed my breakthrough pain medication back to Vicodin, and indeed the weight caused by the Percocet lifted. I will definitely note this little incident in the "not all meds work the same for all people" file for future reference.

While these insights might not seem like a big deal to others, I truly don't think I would have had them had I not been honest with myself and others, and I actually feel inspired to give up the studio, to bring all my cherished paints and paintings home here with me. In the last two days or so, I've been actively thinking of how I'll rearrange things in this small one-bedroom railroad, and I think it'll work.

It seems that momentum has been once again set in motion, and I am thrilled. But it wouldn't have happened without my taking the risk of being honest with others, and without their compassion in turn.

So thank you, Open Salon. While it was important for me to be honest, it was equally important that you offered such comfort and support. I would not have found this new place without it.

Note to those reading this on Blogger: This blog is cross-posted on Open Salon, a social networking site in the form of a blog.


Sunday, October 04, 2009

Trying to Stay Positive, and All That Bullshit

I've so had it. I try to stay positive, try to be hopeful, try to think of the bigger picture, but in all honesty, today I'm fed up.

I haven't written here in awhile simply because of the malaise of chronic pain. I actually had a decent summer pain-wise, and after my last blog post, I began feeling so hopeful and creative again. The boredom I wrote about in the last post lifted, to the extent that I was even back in my art studio.

But then the pain once again reared is cruel and hateful head, and while I've tried to come to terms with it through acceptance, through prayer, through whatever, it ends up having a crushing effect on me, and all momentum is lost in accomplishing anything, even paying the bills.

Frankly, I'm exhausted. I'm sick to death of this pattern repeating over and over--these emotional ups and downs that have begun to feel like some kind of sadistic torture.

What's saddest is that I feel like life is somehow passing me by. With all I have to offer, with all the things I love to do, the best I can manage most days is to write in my journal--looking for clues as to what will set me free--and watch television.

Entry after entry, I scold myself for not being more proactive, for not changing my habits, pain or no pain, as I can't stand the malaise felt at the end yet another day that has once again raced by with nothing to show for it. I've become the passive observer instead of the active participant in life, and that's a hard thing to accept indeed.

When I actually DO get myself moving, I'm certainly the better for it, as the feeling of creation is like no other. I love the process of a painting--watching it come to life before my very eyes, and I even signed up for the Oct. 18th Hoboken Artists Studio Tour, feeling certain that I'd have a lot of new and exciting work to show.

I also wrote a new song in August, which thrilled me to no end, as it was the second song I'd written in about five years. It seemed to herald in a new creative period, and I was thrilled at the thought.

I'd also been journalling about some sexuality issues, which had been put on the back burner during this awful 5-year pain period, and just so happy to be making new insights and overcoming old fears. I even envisioned myself dating again.

But at some point in early September, it all came to a crashing stop, as the MS Contin was no longer controlling the pain, and I was prescribed low-dose Percocet as a supplement. As usual, this was the introduction of a double-edged sword, as I needed the med to curb the pain breakthroughs, but it only added to my tiredness. To motivate myself while having both pain and fatigue (along with frustration and disappointment) is an enormous task, I can assure you.

I wracked my brain trying to figure out what had changed--what made the pain come back with such sustained intensity, but I could make no sense of it, just like all of the previous episodes.

A part of me likes to think that there are bigger lessons to be learned here, that this is all part of my "spiritual journey" and all that shit, but I'm sick to death of being so fucking positive and hopeful and helpful. I'm sick to death of pain and the addiction it ignites. I'm sick to death of trying to live with it and be a better person. I'm sick to death of being sick to death.

I'm so numb to the ordeal that I can't seem to even cry anymore, which at least used to provide a catharsis--a soothing of the soul that could purge the bad feelings, if only for a little while.

I'm off to the Jersey City Studio Tour now, where my friend Lynda is showing her work. I don't want to go, but I don't want to disappoint her either. What I want to do is medicate myself into oblivion to get some relief, but that will only make me sleep, and then I'll awake after the sun has gone down, realizing that yet another day has been lost. No matter what move I make, there seems to be no good option. Even if I could summon every ounce of courage I had in order to forge ahead, what decision would I make that I'm not making now?

I'm in total darkness right now, and can't see a speck of light anywhere. I keep spinning and looking, but there's nothing. And so I just sit, wrap my arms around my knees and wait. I don't know what else to do.


Tuesday, August 11, 2009

Looking for bodies...and Vicodin

Make no mistake, I'm experiencing the mother of all boredom attacks.

I can't remember when my life has felt this dull. With all the things I love to do--write, paint, make music, dance, bike--you'd think something would catch my interest. But nope. I got nuthin'. I don't even feel like watching TV shows about serial killers. Can you imagine?

I fully suspect that my problem is that I miss the Vicodin. I switched to MSContin as a pain reliever a week or two ago, and while it's an opiate, it's a boring opiate in that it doesn't make you even a little high. It helps the pain somewhat, but who cares? So did the Vicodin. What I need here is to medicate MY REALITY, not just the chronic pain in my jaw. I need TO ALTER MY WORLD WITH DRUGS, PERIOD.

One interesting thing that did happen today was that I got a pain attack, but in not having any Vicodin, I couldn't escape the emotional panic that always ensues, and I got really really pissed off. I mean, what am I supposed to to with that? Just sit around and be miserable?

I gave in to drinking a glass of wine, thinking that would help me escape, but you know what? Drinking bores me. I was so worried the other day that in replacing pills with alcohol that I'd become an alcoholic, but I've no fear of that anymore. Alcohol only increases my boredom and gives me an acid stomach, the latter of which is not interesting at all.

Sometimes Vicodin would make me vomit, and that was mildly interesting, but indigestion registers high on the boredom scale. Plus, alcohol does nothing for the pain. It does make me want to smoke, and that's a little entertaining, but only for 90 seconds or so. About halfway through the cig, I get bored and put it out, which considering the cost of these things is just crazy. Then again, they're SO expensive that there might actually be a market for half-smoked cigarettes, but I'm too bored to consider new business propositions.

I want my's that simple. Like a baby who gets her bottle taken away, I'm throwing a temper tantrum, but not in a way that's melodramatic or even amusing. I'm not breaking things or yelling at anyone. I'm not running into bad neighborhoods looking "to score" nor am I prostituting myself for drugs, which would be an unwise business move anyway considering how flat-chested I am. I'm just pining away for that pillow-soft world that Vicodin brings.

What's not boring but instead irritating right now are these constant helicopters making a racket above my apartment house. I live on the banks of the Hudson River, across from NYC, where there was that plane/helicopter collision two days ago. They're still looking for bodies. My "in the know" pal in Hoboken here says they just found two bodies in the river that had nothing to do with the crash. Such typical Jersey stuff. He's a shady character. Maybe he has some Vicodin.

I don't need to do that, though. If I want Vicodin, I know my doctor would give it to me if I asked, as he has compassion for this pain mess I'm in. But I also know that would be a step backwards. Right now, I just have to put one boring foot in front of another boring foot, and walk this boring path into a new world that from here looks totally boring.

Lemme see if any serial killers are on TV.


Thursday, August 06, 2009

When Love Is Enough

I awoke this morning with an aching emptiness, as I knew this was a day that I was going to take a much harder look at myself, without the crutch of abusive substances.

What's been a little disturbing lately is my glass of wine in late afternoon, after my day is pretty much done. It's never been a problem, nor even a daily habit, but I've noticed this past week or so that the time I pour it has been inching up by a half-hour or so, and yesterday I poured a small amount at about 2:30 p.m. instead of my usual 4 p.m. or after.

While my intake has remained the same, this earlier start is scaring me, as it should, and when I went to sleep last night, I promised myself that today, no matter how well I'd be able to resist the clutches of pain medication, smoking and now wine, I would at least take a hard look at my feelings, and the best mirrors I've got are my private journal and this blog.

What's so interesting about these promises we make to ourselves is that most of the time they're half-hearted, something we say to make ourselves feel better for the moment, but never really put into action. But then there are those occasions when we know we mean it, and that's when life can get scary indeed.

Even before I began journal writing today, my anxiety level was up, almost as a type of wall to prevent me from this little trip into the unknown. But I stuck to my guns, made a cup of coffee, watched the last few minutes of a Sopranos rerun (no matter how bad things are, I have to see what Tony is up to), did not light up a smoke, and began writing.

I wish I could say that some startling insight was uncovered, but instead, what became as plain as day was that the pain in my jaw is still holding on with a fierce grip, and I literally felt sadness wash over me like a wave.

Somehow, in recent months, I've been distracted from the pain by family drama, by new freelance writing assignments, by trips to the shore to help my parents, and, of course, by pain medication.

When I told my doctor last week that I was taking way too much Vicodin, he switched me to MSContin, which is morphine sulphate in pill form. While that may somehow sound more dangerous in terms of addiction, for me it's a better choice in that I actually take less medication yet get better pain control. And I don't get the mood lift I was getting from the Vicodin, which, to be honest, is something I've come to miss.

With MSContin, the medication is released slowly over the course of 8 hours, so there's no rush, and therefore no quick and easy escape from the pain and sadness of my condition.

When I just sat with my feelings this morning, not having any deadlines looming or any particular place to be, there was a stillness there, a lack of motivation of any kind, which was in such stark contrast to just yesterday morning, when I felt like I had the world on a string, making all kinds of plans for a type of playday as a reward for meeting a big deadline--first to ride my bike, then to paint at my studio.

Those plans changed, of course, when I took that first sip of wine at 2:30, and interest in anything else simply and quickly waned. I cursed my behavior, vowing to do better today, and indeed I have. I've had one dose of medication and one cigarette, and it's now nearing 2 p.m. And I've made plans to meet a friend in about a half-hour.

But the pain in my face has me reaching--that feeling of wanting to grab something, anything, that will make me feel better, that will quell the loneliness that comes with chronic pain and constant disappointment.

At this particular moment, I suppose I need to just have faith, not in God, per se, but in the realization that in resisting the reach, I will feel better overall--maybe not now, but perhaps tomorrow, or the next day. That's hard to see in the moments of deep sorrow or wrenching pain, or in the throes of an addiction spell. When the latter occurs, it feels like every cell in my body is screaming for relief, and turning a deaf ear for the five minutes or so it takes for a craving to pass can feel like a lifetime.

I talked to a friend about faith earlier today, and I can see that I haven't lost it--it's just changed shape. When I pray now, I don't use the word God anymore, as it's attached to just too much baggage from my Catholic upbringing.

I pray to the "Universal Spirit" instead, which when I shorten it to the letters "U" and "S," spells "us." And that's something I can get with indeed.

All this misery has made me feel the love of others and within myself in ways I never have before, and as I said to my friend this morning, in terms of faith, love is enough. I don't need to pray to some great being in the sky, but I do need to pray to whatever the mysterious source is of all this deep compassion. When I pray to this universal spirit of love, I feel it, and I feel it for me in particular.

That's new.


Sunday, July 12, 2009

My Father, My Car and Michael Jackson

It's been over a month since my last post. During this time, my dad had a heart attack, which required a week in the hospital, then quadruple bypass surgery, which required another week, and now rehab, where he's been for seven days and will be there for seven more.

To call this a stressful period for both me and my family is an understatement. Of course, the stress caused by a parent suffering through a major health issue is a given for any adult child, but what I didn't expect was the resurfacing of major issues from my childhood, which, oddly enough, has given me great insight into the death of Michael Jackson, which also happened during this time.

In a sense, I wasn't at all surprised that my dad had the heart attack, as the week before, while visiting my parents for four days, my dad was raging. Even though I talk with my mom every day, I hadn't visited them much during the spring as I was without a car, and as I have a 17-pound cat, transport to and from the Jersey shore on mass transit was just too problematic, so I wasn't aware of how bad the rages had become.

As I was struggling one week looking through the classifieds to find a used car I could afford, my dad made the extraordinary offer of buying me a completely new car, so I purchased a $13K Hyundai Accent, which was thrilling, as this was the first time in my life to own a brand new vehicle.

Over the course of my life, the way my father has so often showed his love for me has been via my cars. Before my parents sold their suburban home and moved to a garden apartment at the beach, whenever I'd visit, my dad would lavish my vehicles with the type of attention and interest that he found too difficult to express to me personally. My visits to their home often resulted in my car getting washed and waxed, a new oil change, and a full tank of gas.

Even though conversations could be difficult, as his moods were always so unpredictable, I could frequently be assured that my car would leave the drive in fine shape, and as I got older, I realized that this was an act of love on his part, and I recognized it as such.

His behavior was often bittersweet in so many ways, as I'd always known that the guy would have taken a bullet for me, yet when it came to day to day matters during my formative years, he seemed to have a pathological need to criticize me, and it was beyond him simply wanting to live through his child, as many overly critical parents are wont to do. His criticisms often had a sadistic edge, where there was clearly a perverse type of pleasure in making me self-conscious or embarrassed concerning things I could do nothing about, like certain physical characteristics.

He would also often fly into rages over absolutely nothing at all, like me having "looked at him funny," which could mean the silent treatment for weeks at a time, or saying words that were just so hurtful that it was actually better for him to say nothing at all.

To detail all of the infractions would be just too painful to relive in this essay, and perhaps isn't even necessary, as the point is that no matter what our parents say to us while we're growing up, either good or bad, we're irrevocably shaped by these words, and if they're harsh, we can spend nearly all of our adult lives trying to unlearn the falsehoods we were taught about ourselves as kids.

This has certainly been the case for me, yet during the past ten years or so, my father had calmed down considerably due in large part to the onset of hydrocephalus, a condition whereby fluid accumulates in the brain and makes the patient very tired, forgetful and quiet. While this illness made me miss the part of my dad that could be so charming and funny (at least with others), I certainly didn't miss the verbal abuse, which could still rear its ugly head now and then, but not to the extent it once had. In a a weird way, this was a blessing, particularly for my mother, who cares for him solely.

Yet for some reason, in recent months, the rage seemed to resurface, and it was worse than ever. My mom attributes it to the election of Obama, who he hates, and his constant viewing of Fox News, which fans the flames of bigotry and hatred no matter how "fair and balanced" they say they are.

The week before his heart attack, I experienced this rage firsthand when I went to the shore to show my parents my new car. What should have been a joyous gathering to celebrate my swanky, new vehicle instead turned into a four-day diatribe against me, the likes of which I hadn't experienced since I was a girl. And just like what happened in my most innocent days, I was caught completely off guard, and felt devastated by the contempt and loathing directed at me for no reason at all.

The first day I was there was innocuous enough, but on the second, while watching television together, I asked him to hit the "info" button on the remote, and he screamed that he wasn't going to "hit every goddamn button just so that you can see the year the film was made!" He then threw the remote at me before storming off to his room for a few hours.

On day three, while Obama was making a speech, he began ranting about what a liar he was, a familiar tactic to bait me into a political conversation so that he could rail against liberals and minorities. (I now just walk away from these useless discussions, as he loathes liberals, of which I'm one.) And on day four, while my mother was visiting a sick friend in the complex and I was doing the dishes, he asked, "Why are you still here?" in the angriest of tones. The list could go on, but you get the idea.

By the time I left, I couldn't get out of there fast enough, so when I got a call from my mom the following weekend that he was in the ER with a heart attack, my knees buckled a bit (despite the abuse, I never want to hear that either of my parents is suffering), but I wasn't surprised at the news. None of us was.

As we began visiting him over the next few weeks, the old dynamic took root, and I could feel that old familiar depression set in, as he was so charming, sweet and funny with all the doctors and nurses, but absolutely vile to me and my mom. (He's somewhat calmer with my sister, my only sibling who's 16 years younger than me--the "surprise" baby of the family; he's always been closer to her as he had a much larger hand in her rearing. Still, she, too, has suffered at his hands, and bears similar scars as a result.)

The unkindest cut of all came on the day he was transferred from the hospital to rehab. After my mom and I spent four and a half hours with him this one particular morning, I suggested that she and I go home for awhile, then come back a few hours later.

In a sneer, he uttered, "Don't you want to be here?" I said, "Dad, we're just going to go home for a bit. We'll be back. Please don't be offended."

And with that, his face blew up into a tomato-red balloon, he showed his teeth, then raised both fists to my face. I don't even want to recount what he said next, but it's something no daughter should ever hear from her father. I was absolutely stunned, and on the way home with my mother, I said things I couldn't believe would ever come out of my mouth. My basic premise was that it would have been easier if he'd just died.

Not surprisingly, we didn't go back that day, and for the rest of the week, I didn't go visit him. My mom did, as did my sister, and both repeatedly said he owed me an apology. At first he growled, "I don't owe her a damn thing," and when my mom said at one point that I was still very hurt, he said, "Let her stew in it."

But as the days passed, I suppose he began to think about what he had said and done, and he begrudingly agreed that he owed me an apology. So I relented and went to visit him yesterday, and upon leaving, he said, "I'm sorry we had an argument." I had to laugh somewhat, as he didn't take responsibility at all for what he had done, but I knew that was the best I was going to get. I kissed him goodbye and said, "I just want to be friends, Dad. All I've ever wanted was a loving relationship with my father."

I could see he was uncomfortable with my comment, as his eyes darted around, and he mumbled something like, "Okay," but that was that, and I came home to my apartment, where I'm tending to my own life before I head back to the shore again in a few days.

What I'm left with now, of course, is keen insight into how I've been shaped by my father's behavior towards me all these years, and despite the decades of psychotherapy, I'm realizing that while my happiness is entirely my responsibility, the scars left from the psychological dismantling of my identity and self-esteem in childhood might never fully heal, and maybe that's okay, in a weird way. It all has made me a more compassionate, tolerant and open-minded person, and for this, I'm thankful, although I'd like to think I would have been this way anyway, without all the misery.

After Michael Jackson's death, so much information came out about his own father's treatment of him, which wasn't exactly news, of course, but the revelation of the depth of Jackson's torment was something I fully understood in a way I hadn't before. And to hear that he'd become such a pill addict was another uncomfortable identification with him, as these painkillers are still a monkey on my back, but I've developed a strange comfort with this creature, as sick a relationship as it may be.

After my surgery, I did begin to experience some pain-free days (even without the hyperbaric treatment, which Medicare declined anyway), but with all the emotion stirred by this recent debacle (and the descent back into bad habits, like smoking), I've been holding onto the pills tighter than I perhaps ever have.

The emotional trauma set the pain off again to a searing level, and during the 48 hours after my father's outburst, I literally could not stop shaking or crying. I was in such a rage myself that I swore I'd never speak to him again, but I soon realized the destructive power of holding onto anger, and upon the advice of my friend Paul, I began to pray for my dad, and slowly, the rage did begin to lift.

Instead, I began to feel compassion for him, wondering what in the world had happened to him in his own childhood that created this Dr. Jekyll/Mr. Hyde personality. In talking with my cousin, who is close to my dad's age, family stories have begun to surface that are dark and cold, and it's clear that the cycle of abuse is a mysterious beast indeed.

Last night, after I came home from the shore, I had dinner with my dear friend Lynda, and after catching up on news about our own lives, we began to discuss the tragedy of Michael Jackson, particularly about the connection between his father, his plastic surgery and his pill addiction.

At one point, Lynda told me that upon hearing of Jackson's demise, she couldn't help but worry about me and my own painkiller abuse, as there were such parallels between Jackson's story and my own, albeit without the plastic surgery (not that I haven't considered it over the years, but I've never been able to afford it; plus, I knew there was much more to learn by not doing it).

When she said this, there was that pregnant pause between friends when an uncomfortable truth is uttered, and I did indeed feel a chill. As I've pondered Jackson's death these past weeks, I keep thinking, "Why didn't you get help? Why did you use the pills to squash your sadness and anger, and why couldn't you get off them? Why did you let your father's words destroy you?"

It's easy to ask these questions of another person, but not so easy to ask them of ourselves. I do ask them, of course, but that doesn't stop the next pill, the next cigarette, the next glass of wine or the relentless pain in my face and jaw. It's all a recipe for disaster and death, made all the more real by Jackson's untimely self-induced passing, and by the memory of my dad's fists in my face, and the outburst of words that can never be taken back.

I can't let him destroy me.


Tuesday, June 09, 2009

The Taming of the Blue

It's been a little over a year since I wrote my History Repeating post about the plague that engulfed Europe in 1347. Like a number of essays on this blog, it was inspired by a show on the History Channel, which just happened to air again yesterday.

I was just as fascinated with the program as I was 13 months ago, but what was even more intriguing was my very different response to it this time around.

Last year at this time, I was in such a state of profound questioning about God, railing against life's unfairness, and feeling that I'd somehow been singled out by my creator to suffer extreme and unending pain for reasons known only to him. My intellect grappled with this daily, on the one hand clearly seeing that I was just an unfortunate victim of circumstance, but on the other, feeling some deep sense of deserving this punishment, and maybe more hopefully, feeling that this was part of some divine plan designed to teach me something profound.

In hindsight, no matter how you look at it, any response I was having was tremendously self-centered, and I say that not as a self-criticism, but as a simple, if uncomfortable, observation.

Of course, it's natural to focus entirely on oneself when physical agony sets the tone for the day, but all that grappling with profound questions has led me to a curious state of being indeed, and one that I didn't at all expect, for in all my questioning about God, the place I'm being led is not to the heavens, but back to earth, upon which I feel like I'm walking for the very first time.

I've always been somewhat of a heady character, and in fact used to joke that my body was the thing that simply carried my head around. In being a creative person absorbed in the arts, I was always writing songs or painting pictures, and when I wasn't doing that, I was pondering the after-effects of therapy in order to unravel a more happy existence. In short, my head was in some very stormy clouds nearly all of the time, and the world around me was something I witnessed but kept at a distance, as I was the star of the show, so to speak, slightly removed and certainly above the mundane world of ordinary folks.

In short, I suppose I was something of a snob, albeit a nice one, but my niceness in no way affected my ambitions to be bigger, bolder and better in nearly everything I did.

What a moron.

I can see this so clearly now, and while a little embarrassed by it, I couldn't be more thankful that this old crusty cloak is slowly disintegrating all around me, and I do have to wonder if this horrible, awful, painful ordeal has had anything to do with it.

Two weeks ago, I had yet another surgery on my jaw, and by all accounts, it seems that my attempts to rid myself of pain have failed yet again. In fact, I may have even made matters worse, as the wound and bone refuse to heal.

This landed me at a local hospital's wound center last week, where I'm on deck (if Medicare approves it) to receive treatment in a hyperbaric chamber, which will be six weeks of being locked in a pressurized glass tube three hours a day. I'm told that this will force more oxygen into my system, thus destroying all bacteria and fostering growth of new blood vessels. Apparently, my chances are 50/50 in terms of pain relief, which before might have depressed me, but now...well...I'm not sure it matters which way the wind blows.

I felt this same way just before my surgery, in fact, which was in such stark contrast to so many of the other surgeries these past five years. I used to pray so hard for a positive outcome, only to be devastated when those prayers weren't answered. In many ways, I felt exactly like the plague victims, who turned to God and their faith for relief from their terrorizing torture, only to be ignored and left to their own devices. Clearly, the god of their understanding became irrelevant when it really counted, just like my own understanding of God and faith faltered when the going got tough.

When I take a closer look, I can see now that I was asking all the wrong questions and focusing on (and praying for) all the wrong things. While it was certainly appropriate and understandable for me to rage at my fate, I can see now that this ordeal has taken me completely out of my head and landed me squarely on my feet, where I now feel the dirt and sand between my toes in ways I never have before.

What's so startling is how I now move in my world. Despite the pain, no matter where I go, I seem to laugh and talk with just about everyone, and I'm quick to help when I see someone in a jam, whether it be a mother struggling to get her baby stroller up the subway steps, or an old lady waiting in the rain at a bus stop, who I pick up and drive home. I hate to think that I didn't help in these ways before, but what I'm guessing is that I just didn't see these situations, as I was too blinded by heady concepts and my own ambition.

In a waiting room the other day, for example, I began playing with three little brothers as if I'd known them my whole life, and in short order had everyone in the room laughing with our antics. The connection was instant, strong and barrier-free. I complimented their mom and dad on their beautiful family, and was warmed by the very thought of these three little devils for the rest of the day.

This may not sound like a big deal, but I can't really remember this ever happening before. When I say I talk with and smile at everyone, I mean everyone, and this glorious, bustling city I live in provides ample opportunity to flex my new friendly and outgoing muscles. I crack wise with cops and politicians, I have coffee with artist friends at local cafes, and I thank my bus driver after every single ride.

Oddly enough, as I write this, I'm actually having a very bad day. The pain is as bad as it ever was, which often leads to combustible outbursts of tears and long periods of sleep.

In a sense, the malaise and sadness about this condition haven't changed, but what has changed is that I don't expect to not suffer anymore. When I look at the world at large, either now or in the past, great suffering certainly isn't anything new, or anything unique to me. Maybe the trick to my ultimate contentment will be to be at rest with what is and to use that as the stuff of glorious, creative absorption, which is, of course, the ultimate painkiller.

It sounds so simple, but it's quite hard for me not to define myself by my accomplishments. No wonder this pain has caused such suffering on so many levels, as it has forced me to sit still and think, to rest, to just be. For so long, I felt like my accomplishments had to be huge in order for them to matter to the world, to make a difference. I'm only beginning to see that a smile exchange with just one person can light a spark for us both that can illuminate an entire hour, or more.

I should know in a day or two if Medicare will approve the hyperbaric treatment. If that does happen, I'm not expecting much, other than some claustrophobia and maybe some nice encounters with staff, who I suspect I'll get to know quite well. Maybe there'll be some kids in the waiting room.


Saturday, May 16, 2009

Praying for Rain

I watched the Farrah Fawcett documentary, Farrah's Story, last week about her two-year battle with cancer, and it was extremely moving, particularly since she's seemingly so close to death. Rarely do people document their health ordeals in this way, and what struck me most was her journal writings, which she'd narrate as a voiceover throughout the film. What a writer.

It's easy to dismiss Farrah, as she's been a pop icon for so long, but so often we forget that the caricature of someone portrayed in the media really has nothing to do with who the person is as a human being.

What struck me most was her simple, compelling journal description of rain drops, seen through the window of a German hospital where she was receiving alternative treatment, and how she would miss them and the senses they evoked since childhood if she died.

By this time, I was a crying, babbling idiot, not only because of Farrah's suffering and bravery, but because of the stark realization that I had no idea of what she was talking about.

When I heard her description, I tried to remember the last time I had any affinity for rain drops, or for any aspect of nature for that matter, and instead could only feel the sharp disconnect from life in general that one experiences when in chronic, untreatable pain.

Here was this woman repeating over and over how much she wanted to live, yet so often in the last five years or so, I've repeated over and over how much the pain has made me want to die, rain drops be damned.

What's also curious about Farrah's struggle is my familiarity with it, not due to this current health crisis, but to the one I had in 2002, when I was hospitalized with portal vein thrombosis (a blood clot in the liver's major vein) and Budd Chiari Syndrome (a clotting of most veins within the liver itself).

As the clot had happened apparently over time, it had calcified and spread to my splenic (spleen) vein, and the upper mesenteric (stomach) vein, the latter of which is almost always fatal. As my body had created "collateral veins" around the clot (thus supplying my liver with the blood it needed), doctors decided that nothing could or should be done, and my chronic abdominal pain would simply be handled with painkillers.

Even though this abdominal pain was chronic, like the jaw/face pain I have now, there was something very different in how I experienced it, mainly because the painkillers gave me complete control over it. All I needed most of the time was Tylenol, but when breakthrough pain occurred, about three times a week, a single Vicodin pill would do the trick, and I could go about my life.

In a strange way, it was all an exquisite experience, because I did indeed look at life differently once the ordeal settled down. I was so much more appreciative of all I had--friends, family, creative pursuits, a successful freelance career in writing and editing--and everything in the world had a new poignancy to it that could easily bring me to tears, not with sadness, but with a type of deep compassion for all living things. I began rescuing bugs, even, from the shower or from a drink that had a tiny gnat in its grasp.

I was living with a sense of urgency I'd never known, acting on creative ideas immediately and fully with a new selflessness, caring not so much anymore about accomplishment, which used to define my worth, but more about making connections. I was living so differently that I was actually glad this catastrophic health complication had happened, as my life had become so much more fulfilling as a result.

But then 18 months later, in March '04, the hemorrhage happened and I lost seven pints of blood in 24 hours. The ordeal was far worse than the blood clot of '02, and the extreme loss of blood caused the worst complication of all--the return of this jawbone infection, heralded in by an explosion of pain in my face.

I can remember the day it happened, because the fear that accompanied it was akin to what one would feel entering a torture chamber. When I first experienced the jawbone infection in '99, my research offered a grim prognosis, as I learned that there was a very high rate of suicide among patients with this affliction. I felt damn lucky that within two years or so, the infection somewhat resolved itself, as most patients must live with it their entire lives, which was an unthinkable existence.

But here I was in 2004, knowing full well that my luck had run out, and the beast was back worse than ever. Instead of pain being a reminder of all I had, this pain was a merciless taunt about all I was about to lose, because I knew full well that it was going to take everything out of me for a long time.

While the clot experience of '02 was ultimately poignant and enlightening, connecting me deeply with my world, the health disaster of '04 was its polar opposite--cold, harrowing and a walk in complete and unending darkness. As this bone infection is so rare, there was no one who could relate to this experience in any way. And the top pain specialists in my area could offer no hope at all, either for a cure or for treatment.

In short, I was on my own in a way I didn't think possible, and I've been walking this dark road for five years now, with both pain and painkiller addiction my primary companions. The only way I've been able to survive is to have made a certain amount of peace with them, which has been a lesson in patience indeed.

On Tuesday, I'll be having more surgery on my jaw, and God-willing, I will finally reach the end of this long, dark journey and get my life back. I'm curiously feeling fear at the thought of either outcome. If the surgery doesn't work, I may have to resign myself to a lifetime of chronic pain, but if it does, it will be a whole new me who returns to the land of the living. If I'm fortunate enough to experience the latter, I doubt I'll ever complain about rain again.

Tuesday, April 21, 2009

Understanding Suicide

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.

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 serotonin, 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 chemical 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.


Monday, April 13, 2009

A Toll On My Soul

I was procrastinating on Saturday, as usual, so when I went to pick up my pain medication at the pharmacy across the street, I found that they'd closed a little early, and I was absolutely freaked that I wouldn't have enough meds for the following day, yesterday (Sunday).

For someone in chronic pain, narcotic meds are a type of deal with the devil, for on the one hand, they provide a certain amount of relief and respite--a sense of control over miserable circumstances--but on the other, they rob you of your normal emotions, even if, like me, you don't necessarily feel high anymore (not unless you take too much, which I've been wont to do now and then).

When I saw I had just one 10 mg Oxycontin pill yesterday morning, I knew it wouldn't be enough for the day and this made me nervous, but what was actually disturbing was the realization of how much a part of me these pills have become.

While they do ease the pain somewhat, they also take a toll on my soul, and it's hard to imagine life without them now. In a strange way, they fill the space that is the loneliness one feels with chronic pain. When I take my pills, the world is a little brighter, a little softer, and I'm happy to passively sit back and let it pass me by. But it's never without some regret, for when I watch TV, it's like I'm watching others live life for me, and I'm envious of their healthy, vibrant lives.

If it's a true crime show, I wonder what it's like to passionately catch crooks all day; if it's a TV drama, I wonder what it's like to live the life of a successful, creative actor; if it's a reality show...well, OK, I rarely envy those folks, especially any of those Real Housewives babes. If I lived in a world where I ever had to go to a "big hat luncheon," I'd slit my wrists. But I do envy their healthy, pain-free life.

In the past few months, I've even become something of a recluse, which is just plain weird for me, considering my personality. But the pills actually make watching lots of TV interesting, which is what I learned yesterday, as without the pills I was absolutely bored to tears by just about everything. I almost didn't know what to do with all the time, not because of the pain so much, but because I no longer recognized myself. Spitfire Mary Ann has turned into a human lump on the couch. I didn't even feel like shaving my head, which is saying something, because I always get a big kick out of that.

I can tell I'm withering, as I now shave my noggin every two weeks or so, as opposed to every five days. I used to love the fiery feelings my hairless dome would bring up--such adventure, such mischief--but it's as though there's few feelings at all anymore, except exhaustion from all this endurance.

I have to remind myself that I haven't given up--that the therapies I've set in motion take time to come to fruition. Hopefully, I'll get accepted into NYU's psychoanalytic program, so that I can probe the mind/body connection in all this, and once that happens, I'll have more surgery. I want to do things differently this time. I want to be more aware of what's happening in my subconscious before I go under the knife again, which is a curious goal considering I really have no feelings to report, other than an opinion on that cool Chariots of the Gods show on the History Channel yesterday, which wasn't boring at all.

I have to admit; watching all those talking heads speaking so enthusiastically about the possibility of ancient aliens made me wonder what it's like to be an anthropologist. Who would I be without all the pain, all the pills?

It's a beautiful, sunny day today, but it may as well be raining, 'cause I doubt I'll be going out. I know I should push myself, but I'm no longer chasing my dreams and passions anymore. I'm instead running from the monster as fast as I can, only to find he's keeping up quite well and resting comfortably, in fact, in my own body. The only ammo I've got is this friggin' pill, which tames him temporarily, but tames me, too. I'm just so sick of all this crap, all this pain, all this confusion, all these pills.

Now where's the remote?


Saturday, April 04, 2009

A Big Bubble of Love

It caught me completely off guard. On Wednesday I was walking down Washington Street, a main shopping avenue here in Hoboken, and I was suddenly overcome by what I can only describe as a deep sense of peace.

The night before I did some jaw exercises, which mysteriously alleviated the pain (usually they don't work), a state that lasted into the next morning, so at first I thought this newfound contentment was just a result of having a good day catch me by surprise. But there was an otherness to it that I'd never quite felt before--a feeling that it wasn't coming from within me, but rather something that was surrounding me, like a big bubble of love.

I was so invigorated that I decided to keep my appointment with my life coach, Nancy Colasurdo, and afterwards had the energy to do multiple errands around town, which ordinarily would feel like lifting boulders but instead felt effortless.

In a nutshell, I suppose I was just plain calm for the first time in months.

When I got home that evening, I didn't check email for some reason, which is unusual for me. It wasn't until noon the next day that I finally opened my inbox, and to my complete astonishment, there were dozens of emails alerting me to all of the responses to my new blog at Salon. (Even though I publish primarily at Blogger, I recently signed up for a blog at, which takes your feed and reproduces your blog post for post, creating a perfect duplicate.)

When I began reading the comments, I was overwhelmed by their compassion, intelligence and offers of prayers, which made me wonder: Was this the reason for that sense of peace the day before?

Wednesday morning, I did read one Salon comment from Vonnia in response to one of my posts in which she said, "I'm holding your hand, and I won't let go." It was so powerful, so sincere, so touching that I carried those words with me throughout the entire day. And I was so surprised at the intensity of my reaction to them, as they felt just so real--like someone was really there holding my hand, bearing silent witness to my suffering with a type of strength and fortitude I couldn't summon on my own.

Who was she, this anonymous woman who offered such a simple promise that has me in tears as I write this?

And who were of all these amazing souls, for that matter, who took the time to write such powerful, warm words straight from their center, who got down in the trenches with me to offer such solace, such understanding, such compassion.

I truly believe that the combination of everything was that fuzzy thing that wrapped around me that afternoon, a full day before I knew where it was coming from.

There are forces out there that we still don't understand, that we haven't fully harnessed, for if I could feel so strongly this outpouring of love, imagine what we could do as a people if we focused our prayers (in whatever form they take) in a collective way on specific issues. Perhaps we really could change the world just by channelling the love in our hearts. That might sound naive, but I know what I felt Wednesday afternoon.

While I've written a lot of words here, there are none that can express my gratitude for this generosity of spirit from perfect strangers. For a chick who's got a lot to say about everything, I'm speechless.