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!