Saturday, November 29, 2008

How To Shop For Olives

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

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

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

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

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

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

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

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



Sunday, November 23, 2008

Soul Paralysis

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 Yesterday, I decided to clear off some outdated papers hanging on my fridge, and one was an old schedule of my flamenco teacher, Victorio, who's now teaching in a new location.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Friday, November 21, 2008

The Pendulum Of Consciousness

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Sunday, November 16, 2008

Life In The Penumbra

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hope springs eternal.


Saturday, November 15, 2008

Tea and Sandhogs

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

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

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

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

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

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

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

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

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

Wednesday, November 12, 2008

Popping Mad

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Saturday, November 08, 2008

Out Of The Mouths Of Babes

The pain has returned, as have the painkillers. And so has despondency. Perhaps the worst thing about a period when the pain is moderate and endurable is that I tend to get overly optimistic, hoping that my jaw/face pain is on its way out for good. When it inevitably returns, my heart gets crushed like a bug under the shoe of a crazed ant-killing five-year-old, and when it goes on for days, I feel like tearing my hair out. Luckily, my head is shaved, lest I have huge patches of scalp circling my dome, nicely shaped head or not.

What to do...what to do. I become plagued by the question, and I start making a new checklist of things I've yet to try...that cutting-edge pain center, a chiropractor, meditation, etc.

As these things feel about as exciting to me as paying bills, I decided last night to take a stab at the psychological angle, as I know there are still some profound cracks in the cup of my consciousness I've yet to address, not because I haven't tried, but because confusion still reigns when I attempt to make sense of nagging obsessions and core beliefs about myself.

Dr. John Sarno at NYU has done groundbreaking research about the connection between back pain and rage (Howard Stern and ABC's John Stossel are two of his famous success stories), so I began to ask myself what I'm so damn angry at that I become literally crippled, both physically and emotionally, when this pain strikes.

I've certainly asked myself this before and have spent years in therapy trying to unravel the secrets of my soul, but I know I need to come at this from a different angle now, and in a way, I'm thankful that I'm working a 12-step program, as it's a different personal growth approach than what I've used before.

But the answers were still vague until I hit upon the idea of post traumatic stress disorder--a state where someone is in constant hypervigilence in order to avoid the recurrence of a harrowing event. While I know I've overcome a lot of this in most areas of my life, in the realm of romance I still keep my distance, still not understanding what love is all about, instead seeing the opposite sex in some kind of inhuman way.

In my mind's eye, I see any potential partner as a channel through which all my flaws and faults will be ridiculed instead of as a loving person who will accept and appreciate me as a whole package, warts and all.

Years ago, when I was 23, I had a very wise friend my age, Karen (who was also quite the babe), who once said, "We don't love someone in spite of his flaws. We love him because of them." We were at the Jersey shore at a rented apartment for the summer, and I remember the very place she stood in the kitchen when she uttered these unforgettable words.

I didn't understand what she meant at the time as I was enveloped in such personal turmoil and psychic pain, but I'm beginning to now. Perhaps if I can start to truly love myself, I can begin to let down my guard, but in the future with one who deserves and is worthy of such trust. I must take responsibility for my past bad choices, which only reinforced the fears I have as a sort of self-fulfilling prophecy.

Will a life filled with more love ease my pain? Will the excitement of possibility be a tonic for both body and soul? Obviously I can't answer that now, but I love the idea that someone would love me--and me, him--because of our flaws, instead of in spite of them.

Karen's husband is one lucky guy.


Wednesday, November 05, 2008


After Barack Obama's stunning victory last night, I find David Bowie's song "Changes" going through my head today. Like many of Bowie's lyrics, one doesn't always know what he's getting at, but that's what makes them so good, because we can ascribe our own meaning to the images they conjure up.

For example, when I think of the line, "Turn and face the strain," that's exactly what Obama must do now--turn and face head-on the mess that George Bush has left us, and that will be a strain indeed.

There are other lyrics in "Changes" that seem to fit this election, as well. At one point, Bowie brings up the subject of shame, saying, "You've left us up to our necks in it." That pretty much sums up how I've felt about "W" these past eight years--feeling embarrassed and defintely ashamed that America picked such a shockingly inept man to lead this country into the 21st century. I was to the point of feeling concerned about our future as a nation--that maybe the United States had lost its moral compass, and that the experiment of democracy had perhaps run its course.

But then Bowie sings, "Strange fascination, fascinating me." That pretty much sums up how I felt last night, as I watched Obama's acceptance speech, speaking in prose that seemed to speak to me personally, uplifting me in a way that no president ever has before.

I was fascinated by what was happening, and fascinated at my own fascination. At last, the words of a leader were affecting me profoundly, and I could feel them satisfying a hunger that had been there for so long that I almost didn't know I was hungry anymore. As I looked at the screen, I didn't feel like I was watching the posturing of yet another politician. I was listening to a statesman, and I was reminded of something Michael Caine once said on "Charlie Rose" in answer to the question, "What makes for a great actor?"

He said, "A bad actor is one where when you look at the screen, you see the actor; a great actor is one where when you look at the screen, you see yourself."

We didn't see Barack Obama last night; we saw ourselves, and for the first time in a long time, we liked what we saw.