Tuesday, December 30, 2008

The Return Of Pollyanna

I continue to explore this strange, new world. I wasn't sure if this new state of acceptance was going to stick, as this journey of chronic pain has been fraught with so many hills and valleys. But it seems it has, as each morning I'm waking up in a calmer state.

What's troubling, though, is that I haven't given up the painkillers, and I wish I could. I went most of the day without them today, but by the time I got home from afternoon errands (including a 12-step meeting), my face hurt just so bad, and it was all I could think of. I ordered a refill from the pharmacy, took two Vicodin, then fell promptly asleep for the rest of the afternoon.

This is what bugs me about painkillers. They rob me of precious hours of my life. I suppose I was hoping that a new state of acceptance would somehow make me so emotionally strong that I could withstand physical pain, but that hasn't been the case, and I'm wondering now how this is all going to play out.

What I love about pain medication is that, even if it does nothing for the pain, it helps me to escape it for a short while, at the end of which I usually take more to keep the escape going. But what I hate about it is that I no longer experience the natural highs of making art or music. I no longer experience those magical moments of truth where "art happens," and I'm left dumbfounded by what I've been able to channel.

I miss these experiences...a lot.

And as I sit here, I sip on a glass of wine and smoke a cigarette, which, combined with pain medication, makes me feel like a total degenerate. I must be the picture of the classic tortured artist. I can think of friends from the past who found these images of themselves romantic, but trust me, they're not. They're sad, and I feel weak and stupid until I catch myself and just accept that this is tough road I'm walking and will therefore be fraught with mistakes.

Some of my recovery pals like to think that this pain is just a manifestation of my secret desire "to use," and I do try to keep an open mind to their opinions. But as I sit here, my face fucking hurts. It's as real as this tasty Pinot Noir and Camel Light.

Decisions, decisions.

What's been interesting is that in this new state of acceptance, I can see just how angry, bitter, guilt-ridden and jealous I've been towards those who have such healthy and pain-free bodies. I wasn't even aware that I was feeling such things until I decided to stop fighting the pain so hard.

I was even jealous of my two- and four-year-old nieces, who are so innocent and pure, so healthy, so joyous, and live in such a love-filled life. I couldn't look at them at not feel some twinge of sadness and regret, as if all of the good things of life had passed me by, and one of my only real uses now as a human being was to help them grow into strong healthy adults. In such a state of pain and addiction, my life was beginning to feel over.

It was a horrible state to be in, and only now do I see just how destructive it was to my psyche. But acceptance has changed all that. I accept now that these awful things have happened to me in my life, and it's all okay. I can deal with it. I can make something with it; I can give it all meaning, and who knows? Maybe these very writings will be the biggest thing I will ever offer my fellow human beings, which means that every twist and turn won't be wasted, provided I can stay honest and true about every detail (which tonight is the issue of alcohol and nicotine).

I read an article recently by Scott Kiloby about something called "non-duality," which is the name of what I've been experiencing, apparently. We've exchanged a couple of emails about the topic, and he closed one by saying this: "What is, is what is. And a full surrender into that brings a peace of mind totally unknown to most people. I also experience it as unconditional love."

It occurs to me that had I not gone through this terrible ordeal, I might not have stumbled upon this insight, which indeed fills me with unconditional love.

When I played with my nieces this Christmas, I was filled with such light and such joy at watching them tear open their gifts. And instead of feeling any kind of jealousy or resentment, I felt deep compassion for them, as they go through their own trials and tribulations in their growth experience. And I was happy for them that they have a family who loves them so dearly.

Everything seems poignant to me right now, although I think I'm starting with the flu. Although I hate feeling these symptoms, I can even see the bright spot in having a nasty cold in that I don't smoke when I'm sick, and this will be a good break from it for a few days...an opportunity to break the habit for good, hopefully.

I'm feeling a little like Pollyanna again, which has always been an aspect of my character and has been missing for years now. I've always felt it's been a slightly corny part of me, but how I welcome her return. I don't know if she'll be here tomorrow, but she's here right now, and I'm grateful.

Friday, December 19, 2008

The Spoils Of Acceptance

I've been walking in a strange and unexpected state. Something happened in the last few days, and I've been trying to retrace my thoughts to see how I got here.

I've been feeling profoundly more peaceful for some reason, and all I can come up with is that I'm finally in a state of acceptance.

I do remember the other night feeling at the absolute limit of my endurance, and I said, "God, I'm just turning everything over to you. Everything. I surrender. I can't fight this anymore."

I'd like to say that some divine miracle happened at that moment, but what ensued was curiously un-spiritual, which ironically led to a soothing of the soul.

As I lied on the couch thinking these words, I suddenly realized that no miracle, no matter how wished for or prayed for, was going to happen, not because I wasn't deserving of one, but because if there really was a supreme loving being, it simply wouldn't be fair to bestow a miracle on me and not on any of the other six billion souls on this earth, many of whom are in dire circumstances themselves.

I suddenly realized that the clouds above me weren't going to part with angels playing trumpets, simply because there are physical laws governing our universe, and accepting them and the havoc they can create in the human condition is perhaps one of the bravest things any human being will ever do.

To admit that at the end of the day, we really have no control over anything that happens to us is terrifying, and to trick ourselves into thinking we do or that any great "creator" is looking out for our well-being is just, well, magical thinking--a way to feel safe in a dangerous world, and a serious set-up for disappointment should things go tragically awry.

There are the obvious things we can control, of course. We can look both ways when we cross a street, we can dress appropriately for the weather, we can wear our safety belts when we drive, but beyond that, life is a pull on a Vegas slot machine, and the sooner we can get with that, the better.

Unlike animals, humans have a curious habit of asking why horrible things can happen to them, whereas animals just experience the suffering itself, without all the baggage of consciousness. When we look at animals and their troubles, do we ever ask the why of anything? Do we think that deer wasn't "visualizing" a positive outcome hard enough when it crossed the road and got hit by a car?

I'm thinking along these lines because I was recently engaged in an online group debate about the validity of the Law of Attraction, which has been so cleverly packaged and marketed as the bestseller The Secret (even though the concept has been around for ages). It's the theory that everything that happens to us basically isn't an accident, and that all things, positive or negative, come to us because we attract them with our thoughts or "vibrations."

I used to be a huge fan of the Law of Attraction, and while I still think the concept has validity (I even still practice it), I was clearly mistaken in thinking it a law, because as much as we don't want to see it head-on, bad things happen to good people all the time, and they did absolutely nothing to deserve it. The truth is that life is profoundly random, which also makes it profoundly terrifying, and that's a tough thing to get with indeed.

But as in all cases where the truth is faced, there is freedom, and in my own, I'm somehow now freed from so many of the fears I've been attaching to this pain. But I didn't even see those fears until I made the decision to accept every single thing in my life exactly as it is and not as I want it to be. That's not to say I won't keep trying to seek out relief and a more joyful existence, but for today, whatever is going on with me is what I accept, fully. And with that, I'm in pain and at peace, right now anyway. Go figure.

As odd as it sounds, far from being scary, this new notion of randomness actually gives me comfort, because it means that no one deserves to suffer, and those who do simply drew the low card. There is no other meaning to it than that. Tomorrow, things could change.

As my friend Janet recently pointed out in an email, I'm not guilty of anything (a suspicion that has been brewing in my subconscious), just the brunt of a bad break. Ascribing any more meaning to it than that--that maybe God is punishing me for something--is, as she says, "a way of framing the world [that] makes our lives needlessly painful; or I should say, needlessly more painful, because there are no answers, and it’s a terrible, cruel ruse to try to get us to believe there are."

That said, we can create meaning out of our suffering. We can use it to deepen our compassion and to give voice to an experience (such as my own here in this blog) that hopefully others will connect with, so that they don't feel so alone in their own harrowing journey, be they so unfortunate as to have one as grueling as mine.

If we can accept that life is random, we hold onto each other tighter, we laugh and cry harder, we are more grateful for what we do have, and we are more appreciative of the good times, because we know the bad can be just a car accident away. While no one would ever argue with the power of positive thinking, if you don't also accept life's randomness, you rob yourself of the experience of how fleeting, how beautiful and how poignant life actually is.

In closing, Janet said, "There is no god to condemn you to suffering or to save you from suffering. Once we can let go of that dream, that fantasy, things are easier to accept. God is IN YOU, god IS YOU. All the answers lie within yourself."

Amen, sister. Amen.

Saturday, December 13, 2008

The Limits Of Everything

It's Saturday now. It's taken me two days to absorb the consultation at the Hackensack Pain Clinic, where after a long discussion about the details of my health history, I was told I would most likely be in pain for the rest of my life.

While I was told about treatments that might help--a change in medications, injection therapy (which most likely wouldn't work as this has gone on too long), and a type of brain surgery where a device is implanted to re-route the pain signals--the words that echo are the ones that sounded so final. This condition will never heal on its own, as what I'm experiencing now is something akin to phantom limb pain. The source of the pain is long gone; what is firing now are essentially memories of it.

The pain has been worsening in the last month or two, which has made me careless, as I've been smoking again, albeit one or two here and there. Still, it doesn't help matters any.

The doctor I saw was perhaps the most empathetic doctor I've ever seen. He gave me the bad news first and let me cry in a fit of shock at hearing words I wasn't expecting. I might have had an easier time hearing I was going to die than hearing I would be feeling this pain for the remaining decades of my life.

He actually made that point to me--that I was still a relatively young person who had a lot of life yet to live, and therefore something like this motor cortex stimulation (the brain...er...procedure) should be something seriously considered.

I woke up feeling just so sick this morning from all the pills I've been taking, and just so sad, as if a grey mist was circling my entire room. Of course, it might have been the dust build-up, as I can't bring myself to clean anything right now. My poor cat is acting as the dust mop. As she rolls around the floor, her fur picks up all kinds of debris. She knows something is up.

My friends in recovery are so concerned about the effect of this news on my addiction, but addiction right now seems like the least of my concerns. Whatever it takes to get me through the day is what I'll take, addiction be damned.

I'm trying my hardest to move forward. I saw a chiropractor yesterday, and will continue to see him for trigger point therapy; I've made an appointment with my old acupuncturist for Monday; and I've made an appointment with the neurosurgeon recommended by the pain doctor for Wednesday.

It's all a bit overwhelming to find myself at this level of pain again, and at this point of despondency. I suppose the question I'm grappling with now is not how much suffering one person can take, but how many times can they take it?

I'm trying to push myself out the door to work on my Christmas card project down at my studio, but I'd so much rather watch television and escape into lives and stories where things always work out.

I'm also trying hard not to feel sorry for myself, but all this trying in every direction is eroding me to the bone.

I just can't go to the recovery rooms anymore. While I'm happy for everyone that God is working in their lives, as many have truly found peace and contentment, I just can't be there right now and listen to it. Instead of finding understanding and fellowship there, I'm finding, well, nothing.

That said, I'm still working with my sponsor, who I love, as I do enjoy the Twelve Steps. But that's about as far as I can go with the recovery folks right now.

While these other therapies the pain doctor spoke of do present some hope, I just can't feel it for some reason. I'm so used to everything going wrong at every turn that I dare not get my hopes up for anything. While I said in a recent post that disappointment hasn't killed me yet, I fear there IS a limit as to how much one can bear.

Just like there are no absolute truths, there are limits to everything, and I've hit the limit of just about everything I can currently think of.

Getting out of this mess will be a miracle indeed.

Tuesday, December 09, 2008

Hope Springs Until Thursday

It's been a tough week and I haven't posted anything. I suppose I don't want to sound like a broken records of complaints and thoughts that the universe has diabolical plans for my existence.

But it's also been an interesting week. Over the weekend, I was surprisingly in a very low amount of pain and was faced strictly with the issues of addiction. When I'm alone in those very private moments, pill-free and pain-free (my version of pain-free anyway), I'm faced with the curious facts of my life and my history, and I find myself perplexed.

To be brief, I'm aware that I really don't know who I am without all the drama that accompanies the health and addiction issues. When things are quiet, I'm suddenly faced with, well...me. I have this wonderful life set up for myself, which I'm thankful for as I've been able to forge one despite the complications. But when the path before me is clear, I'm lost, as ironic as that sounds. I'm so used to pain and illness (physical or mental) that I'm actually frightened when things suddenly aren't so dramatic--when life beckons with potential.

Part of me fears that without drama, life will be boring, and it does make me wonder if my subconscious somehow creates problems in order to continue the pattern that has been so familiar to me since childhood.

Then again, it's hard to fathom how the subconscious could dig so deeply into biological pathologies--into my bone marrow fer chrissakes--and create such havoc.

Still, it's not lost on me that I expect disappointment in life, particularly when things are going well. Disappointment and betrayal have been constant themes, and the betrayal of my own body has been the unkindest cut of all.

I wrote at length in my journal this weekend, seeing so very clearly the sequence of events that continue to play themselves out in a way that's almost scripted; the players and circumstances change, but the results are always the same: I'm felled and crippled back to square one, constantly starting over only to be disappointed and restricted yet again by some new catastrophe.

I suppose this isn't anything extraordinary. People repititiously get into abusive relationships all the time; drugs and alcohol can be a constant theme for someone for decades; workaholics never see their folly until they're on their deathbeds. Clearly, I fall into a similar category, only my story is slightly different; I ride high with great expectations until something hits me so hard that I'm KO'd in that championship fight where I'm the odds-on favorite. This happens over and over and over.

Even though I've technically been a painkiller addict for four and a half years, I've buried my deepest self and escaped in other ways that have been just as profound, and just as damaging, throughout my adult life.

Physically, something was terribly wrong with my health starting in my late 20s and through my 30s (not diagnosed until my 40s), but that was the side story to my workaholism, which manifested as a music career. I was addicted to it wholeheartedly. I defined who I was by it, and I had no other life other than music for years. While I've never regretted, not even once, any song I've ever written (they seemed to come through me to the extent I almost don't feel responsible for them), being the singer/songwriter was extremely stressful for me as I just didn't feel worthy of the success that I knew the music could bring.

It was as though my own work was bigger than me, and I didn't have the self-esteem it took to shepherd my songs and performances to the success they deserved. But I sacrificed myself for them completely out of pure ambition, and that's the affliction any addict will tell you they identify with.

Despite discovering these new insights, I woke up yesterday morning with that familiar plaguing pain, which again so deeply disappointed me. Surely, when I had these insights the night before, I thought for sure they would be curative. But they weren't, and I'm now back on the pills.

The Pain Center at Hackensack Medical Center has agreed to offer me a consultation on Thursday. As I don't have PNH (talked about in an earlier email), I feel like this is my last hope for relief.

Earlier this evening, my spirits were descending into the logical place where most chronic pain patients with my condition find themselves--that the only logical place left to go is to check out for good, which would be the ultimate painkiller.

As soon as I had that thought (almost to the second), the Pain Center called saying they had an opening Thursday. It's not the first time something like this has happened--that some kind of intervention happened at exactly the moment I needed it, offering some glimmer of hope to keep me going for a few more days. It's like my guardian angel puts in an emergency report to God, saying, "We've got to do something or we're going to lose her."

I've no idea what to expect Thursday. While tonight hope might not be springing eternal, it's at least springing until Thursday.


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.

Wednesday, October 08, 2008

Pinwheels, Baby!

I just opened my living room window to see what the weather was like. Days like this you just can't tell. I woke up to a chilly apartment and had to put the heat on, but it's 2 p.m. now and have to go out. Will I need a jacket?

Turns out my curiosity led to a slightly different discovery. As I opened the window, down below was a sanitation guy who does street sweeping, not with the big vehicle but with a broom and a trash can on wheels.

What was striking about him was that he'd taped a large pinwheel on the front of his trash can, which had an effortless and speedy spin. And in the couple of minutes I watched him, he stopped and had a short conversation with a friend, then waved hello to a passing car.

So often, we can look right past guys like him, and even feel sorry for them, assuming their job is one of drudgery and boredom.

But man, was I wrong. When was the last time I taped a pinwheel to something?

Saturday, October 04, 2008

The Wait Is Over

It occurred to me the other night that for years now, I've been running a tally of all the unfortunate events that have occurred during my lifetime--a tally that has often left me feeling overwhelmed and bewildered, even bitter and jealous towards those who seem to have had such an easier time of it.

But you know what? I'm sick of feeling that way. While lying in bed that night, I suddenly felt that yes, it's true that I've suffered in ways that most people would consider torture, but I also felt that it's all been quite an extraordinary journey in terms of raw life experience.

For reasons I don't fully understand, there's been a sense of shame attached to it, and I see now that I still carry secrets, even after all this time. And in my subconscious mind, these secrets are the proof that at my core, I don't really deserve to be walking around among the masses feeling good and healthy. I'm a fraud, and all this shitty stuff that has happened is because of that--not because I'm a fraud necessarily, but because of what I'm hiding.

But then it hit me: Having survived all of these disasters has certainly made for an extraordinary life, and when I look at it alongside my God-given gift of communication, I can see quite clearly that I'm not really doing anything with it.

On the one hand, there is this all this extreme life experience, and on the other are these communication skills that I've been developing for years. Whether they're skills in writing or painting or music doesn't really matter; it's what they've all added up to that counts--an ability to communicate on various levels with various tools, and I'm not using them to their fullest.

When I used to write songs, I would always incorporate my life experience into the work, even if the songs were somewhat fictional. But when physical pain took over my mind and body, I simply couldn't find the words or the melodies anymore that could express what I was going through. It was that bad.

Painting became an easier outlet, but at some point, my life and my art began to part ways, and I began to wait for that golden day when I'd finally feel better, when the pain in my jaw and face and abdomen would be gone, and then I'd be able to make use of my talents. Only then would I be able to fully enjoy them and make sense of all this, as if 20/20 hindsight were the only valid lens to look through.

But you know what? That painless day may never come. I must face the fact that I've been in pain for nearly a decade now, fighting it every inch of the way--seeking out every resource, every treatment, every doctor I thought might help--and while I've improved in some ways, the suffering on certain days can be as bad as it ever was.

I see now I'm not living an integrated life. While I've been able to accept the darkness in my soul and in my history for the most part, I haven't been able to accept the dark truth that life can be grossly unfair, and when our bodies fail, it can be terrifying...and enraging.

But there's another truth here, which is that no matter what shape we're in, physically or mentally, we deserve to be loved, and we particularly deserve to love ourselves just as we are.

I thought that I'd accepted all this, but the other night it was an a-ha moment indeed to see how I've just been waiting to come alive again. And waiting. And waiting.

The wait is over.

Saturday, August 30, 2008

The Elusive Keyser Soze

It's been about ten days or so since Michael and I met for dinner. And as expected, it was a heartwarming event.

We met at the ferry at the old World Trade Center site (now called World Financial), and I must say, the sight of him shocked me. The pictures I have of him show a small blonde boy, yet on Aug. 18th, he was anything but. I almost looked right past him, in fact, for now he's a big, burly, tatooed, salt-and-pepper-haired construction guy, a man in every sense of the word, carrying massive responsibilities on big shoulders buttressed by thick skin.

He's in charge of one of those new towers at Ground Zero, leading 800 men and 14 supervisors hundreds of feet skyward in a project with staggering safety issues, pinpoint details and pure unadulterated weight.

But I wasn't thinking of that when I saw him, of course. I only saw my childhood best friend, and in that moment, my heart nearly stopped. For a long time, we just sat on the waterfront and held hands, trying in vain to catch up on over 35 years of separation, but mostly just looking at each other for hints of our childhood faces and souls.

Our faces have changed, of course, but within a relatively short amount of time, I was most definitely in the presence of Michael again, as it didn't take long for him to get me laughing.

Over the course of the evening (lasting nearly seven hours), there were countless moments where I was laughing so hard that my face actually ached, just as it did when I was a kid. All the mischief in Michael the boy was there and more in Mike the man, and like the Grinch who's suddenly so touched by the Whos in Whoville on Christmas morning, I felt my heart grow bigger and bigger inside my chest with each passing hour.

There was constant hugging and kissing and reminiscing and picture-reviewing, and before I knew it, nearly all the restaurant patrons were gone except for us, and it was time to leave.

Since then, I've emailed him a couple of times, suggesting get-togethers, as we had talked about various things to do in the future, but it's been almost a week now since my last email, and I haven't heard back. For some reason, I'm not surprised by this, as I know just how much tragedy and disappoitment Michael has suffered in his life, and that the two places he finds the most comfort are at his job and in the company of his daughter. Something tells me he might not want to venture beyond that, and instead leave our child friendship in the past, as a true and perfect thing, a sacred memory not to be toyed with.

So I'm not sure if we'll ever actually see one another again, but one thing I do know is this:

After such a difficult four years of my own, it's been wonderful to discover that such feelings of joy and love are in me, and that I still have so much love to give. I've learned that I haven't turned to stone after all, and far from being bitter, I've actually been able to transcend difficult days of physical pain, a discovery that somewhat shocks me. Love does indeed heal, and I want more of it in my life.

My own wounds have made me fearful of love, too, but when it comes to Michael, my love borders on something truly unique--even divine--and that has made love feel safe to me in a way it perhaps never has before. So whether or not I see him again isn't important, I suppose, although I hope I do.

I thought about him for a long while today, and couldn't help but think of Kevin Spacey in "The Usual Suspects." Towards the end of the film, his character, Verbal Kint, talks about the elusiveness of Keyser Soze, illustrating it with a puff of air into his fingertips, saying, "And like that (pouf)...he's gone."

Michael swept in like an angel of mercy, distracting me so completely from pain and bouts of withdrawal during some crucial weeks. I thought little of myself or my suffering during that whole time, feeling instead the bittersweet pain of grueling anticipation. I also saw the arc of life, my own life and his, and often found myself weeping, not out of sadness, but because of being moved by life itself, and by the bond we shared as children.

But he seems to have vanished just as swiftly, leaving me to feel like I'd been hit by lightning, or perhaps had a shock treatment, and now I'm not quite sure where I am. Luckily, I took a few quick photos that night, so proof does exist that it really did happen. But like Verbal Kint, I'm blowing a puff of air into my own fingertips, marvelling at his sudden elusiveness.

He's where he belongs, though, up in the clouds on the gazillionth floor. I can see his building clearly from across the river here, and I smile when I look at it. He brought love back into my life, and for this, I will forever be grateful to him. I only want him to be happy and healthy, whether we're in one another's life or not.

All this said, I do know that I will see him again one day, if not in this life, then maybe the next. I know him and he knows me in ways most human beings never get to experience. And the power of this reunion restores my faith in a power much greater than myself.

How could I be anything but grateful?

Monday, August 18, 2008

Small, Still Moments

Michael had to change our dinner until tonight, Monday, so I've had to wait THREE MORE DAYS for this meeting.

He's taken me by surprise in so many ways, not the least of which has been his honesty in his emails. Big shot that I am in my oh-so-brave art, writing and music, when it comes to those small, still moments of the heart, I'm often left speechless, dumbstruck, a deer in halogen headlights frozen stiff, waiting to get whacked by certain disaster.

But Michael is open about his fears in meeting me all these years later, fearing that I'll somehow be disappointed, fearing that he'll, too, be dumbstruck. Workaholic that he is, he says he doesn't get out much and that at times, he fears he's a become something of a recluse.

This is amusing, considering his emotional directness and the job he has. In one of his first emails, he told me two very moving things: one, that his 19-year-old son passed away suddenly in 2001; and two, that he's a construction leader at Ground Zero. (I would learn later just how big a job he has.)

The juxtaposition of these two statements made me weep--to think that he had suffered such a loss, yet here he was rebuilding on the grounds of such a staggering tragedy.

In a way, it doesn't surprise me that he says he keeps to himself outside of work. When we were kids, Michael was pure mischief and pure hilarity. I can actually remember being in awe of his sense of humor, wondering how anyone could be that funny.

Yet with the onset of puberty, things began to change. We began to separate, retreating into our respective male and female camps. In eigth grade, my girlfriends were all important to me, and I can remember a day where I walked passed Michael and his friends on my way to somewhere far more important--preening teenager that I was--and I can remember the sad, baffled look in his eye. As girls grow so quickly at that age, we can often look a lot older (and a lot more secure) than we really are, and can become strangers, visually, to those who knew us as children.

I got tall fast, and Michael didn't. And as the girls were so violent in my old neighborhood, it was an imperative for me to get with the right crowd, lest I get physically attacked, which could happen to anyone at any time for no reason at all.

Things began to get dark, and quickly, and not longer after, we both moved. I don't even remember saying goodbye.

Over the years, I would hear about him through the grapevine (our moms kept in sporadic touch)--that he'd gotten married, that he'd had kids, that his dad had died--and I could feel haunted by the thought of him, a feeling that I would just cast aside as there was nothing to be done with it.

But now here he is again. My excitment is so overwhelming that I feel almost numb, strangely enough.

Just three more hours to go...

Sunday, August 10, 2008

A Fine Game of War

I haven't written much here since my last entry, most likely because I feel like my brain has exploded. While on vacation in mid-July, I received an email, via my web site, from my best friend from childhood, Michael, and I haven't been the same since. We're going to meet for dinner this Friday in what I venture to say will be the most anticipated childhood reunion as any that have ever existed since the beginning of time.

I'm not overstating things when I say that, either. Michael and I (who haven't seen each other in well over 35 years) have been corresponding in email for a couple of weeks now, and he feels the same. The power of this re-established connection has thrown us both for a big, fat loop that neither of us quite understands.

Being the writer I am, I'm constantly a spy in the house of life, looking for clues as to what everything is all about--what things mean, why they happen, who I am, who you are, why we're here, etc. But as I'm at a loss as to what's at the heart of this very old friendship, I'm realizing that perhaps some events in life are simply sudden and magic, just like when they're sudden and tragic. The latter I have an easier time accepting as just a part of life, but the former, while indeed happy, perhaps fills me with an even stranger and deeper dread for reasons that are unclear.

All I know is that this upcoming dinner on Friday will take a certain amount of courage, as I'll be stepping back in time, revisiting the people Michael and I were as innocent children, yet planting something very, very new which doesn't have much precedent in the annals of love stories.

And a love story it is indeed, although of a more curious sort--one that seems beyond romance, venturing into truly unchartered territory. Could it be that Michael and I imprinted on each other as infants and children? Does that explain the power of this reunion? Or did we know each other in some other life, hence this grueling anticipation?

The only thing I now for sure is that Michael and I loved each other as kids, long before we had words to convey such emotions. Michael is five months older than me, and we were introduced in diapers, playing together daily until age 11 or so, shortly after which we both moved out of Newark to different cities. We were fairly inseparable--even our bedroom windows faced each other across the narrow alley that separated our houses--and it was a given that we were always on the same side.

If the game was stickball in the street, we were on the same team; if it was cops and robbers, we were both either the good guys or bad; if it was a fine game of war, we served in the same army unit. As an only child back then, I can see in retrospect how much comfort this gave me--to have this ally who knew me so well, and loved me simply because I was, well, myself. We didn't have to qualify for one another's attention or affection. It was there and it was rock solid, completely independent of achievements or appearances. We knew how to "be" together, and how lovely, how thrilling it would be, to have him back in my life again.

Much has happened to us both in our respective lifetimes. It's hard to know if our life experiences will have no bearing at all on our being together again, or if we've each morphed into people we'll no longer recognize.

One thing is certain: Dinner is on Friday, and it can't come quickly enough.

Thursday, July 17, 2008

Oops, I Did It Again

So there I was, trimming the short haircut I've been sporting since February, when it hit me: My hair most likely won't be this short again for a long while, so why not do what I've wanted to do for the last 20 years or so and shave my head?

The hardest part was that first cut, which went deep into my bangs. Once I did that, there was no going back, for obvious reasons. That huge hack just begged for the rest of the hair to go, and after some fumbling around with the new buzzer bought at CVS, there I was: a newly shorn Mary Ann, who luckily has a nice-shaped head.

You can't help but stare at yourself a bit after doing something like that. And there's quite a few emotions that complement such an event. During the first few days, I see-sawed between shock and awe, one minute wanting to cry at the vulnerability I felt (I no longer had hair to hide behind), and the next feeling fierce and beautiful in a way I never had before.

I also had to get used to the man-on-the-street reactions. A shaved head, particularly on a woman, seems to bring out the the friendliness in people. While I'm sure there are plenty who hate the look, they keep their feelings to themselves, while those who like it seem eager to tell me so. Curiously, senior citizens seem to get the biggest kick out of it for reasons I can't fathom.

Once folks express their feelings, they inevitably ask how long I'll keep my hair (or lack of it) this way. I know I'll shave my head until the end of the summer, but beyond that, I really don't know.

What I do know is that this ultra-buzz cut puts me squarely in the moment in a way no other haircut ever has. Perhaps one reason is that I'm very conscious about what I wear each day now; I love dressing up a bit as a nice juxtoposition to this boyish head. I also wear big earrings, mascara and red lipstick to round out the look. Just walking out of the house feels like a creative and fun act, yet all I did was take my hair out of the equation.

I can see from the little stubble that's there that my hair has turned quite grey, something I didn't know as I've been coloring it for years. Whether I color it again when it grows out will be my next adventure, I suppose. A shaved head I can take. But grey hair???? Hmmmm....

Saturday, June 21, 2008

A Tree of White Leaves

I haven't been good at praying lately. My friends in recovery tell me it's a must, that I should actually get down on my knees to do it, but getting down on my knees to pray to my creator has felt akin to getting down on my knees to pray to Hitler. Anyone would agree that it would be ridiculous to pray to a torturer, yet people pray to God all the time, particularly when life's torture is at its worst. Go figure.

But a curious turn of events actually had me on my knees last night, and here's what happened:

For reasons too long to go into here, the painkillers are back in my possession, and yesterday I took too many--big surprise. But it was really bad--the whole day. The facial and jaw pain was bad, and the addiction it set off was worse. There I was again on some kind of psycho auto-pilot, once again watching pills go down my throat as if it wasn't really me doing it.

I was so profoundly disturbed by this behavior (again) that this time it was almost a knee-jerk reaction to go to my bed and pray. I was feeling out of my mind and out of control, and when I kneeled down, instead of clasping hands in the typical prayer mode, I instead threw my head down on the mattress in the way a crying child throws her head down on her mother's lap when she's in crisis. I see my young nieces (ages one and three) do this all the time, and now I see it's actually a beautiful form of surrender, which is what I've been trying to do here all along.

When 3-year-old Catherine is at her wit's end, when absolutely everything is going wrong, the place of comfort is her head on her mom's lap where she literally throws her problems, trusting that the love and compassion she finds there will wash everything clean, and indeed it always does. Nothing earth-shattering happens, mind you; just kind, soothing words from her mom, a stroke of the hair, a soft and compassionate kiss on the head, and a warm smile. And with that, Catherine is always healed...always, and that's something like what my praying felt like last night.

I threw my head down in a fit of frustration and confusion, and something peaceful indeed came over me, so much so that I did it again this morning, much to my cat's confusion.

In my prayers I just said simple affirmations, but this morning in particular, I began to remember dreams I had last night, one of which was seeing beautiful autumn leaves in Philadelphia turning all kinds of reds, golds and purples. Perhaps most curious was a tree that had leaves of white, and I remember saying to the person standing with me, "How strange that they look so beautiful just before they die."

As I pondered this dream, head still on mattress, I couldn't make sense of it, nor of any of the dream's other aspects, but I was happy to have had such beautiful images go through my head in my sleep.

But then tonight, there it was again, the white tree, only this time I was awake. I was watching the end of "The Last Samurai" and just before the great warrior dies, he looks up and sees a tree with white leaves and says, "Perfect. They're all perfect."

I felt my aching jaw drop open in absolute astonishment, marvelling not so much at the meaning of this synchronious event, of which I haven't a clue, but at the synchonicity itself.

A tree of white leaves. Whatever can it mean? One thing's for certain: If I hadn't kneeled to pray, I never would have seen it.


Tuesday, June 03, 2008

Wearing Thin

In AA/NA, people are known to challenge one another, or more precisely, the newcomer. It's always done in a loving way, but this doesn't make it any less irritating, particularly when it's me that's being challenged about a flaw I'd rather not deal with.

For example, no matter where I go, I always seem to be late--not by much, mind you, maybe ten minutes, but nevertheless late. Habitually. AA/NA meetings are no exception, and my recurrent tardiness was recently pointed out to me by my new pal Troy, who I love, but who I'd like to smack at the moment for making me look at this...er...defect.

If I were to stop and think about it, I suppose there are valid subconscious reasons for my stubborn refusal to be on time, but knowing those reasons wouldn't necessarily make me arrive any earlier. The fact is I just have to do it, and it's a habit I've been wanting to break for a long time (although I must admit, the thought of arriving on time for family functions makes me break out in a cold sweat).

I suppose addictions come in all forms, even if it's just habitual lateness, but as they say, nothing changes if nothing changes. I'm not sure what will change if I start arriving on time for things other than I'll just be at places 10 minutes earlier.

But hey--my pain is just miserable today...AGAIN...so I'm willing to take direction on just about anything.

I know one thing; when the pain is bad, I get mighty angry, which I used to mollify with a fistful of pills. Now instead I'm told to attend meetings, like that's gonna do anything (for the pain, I mean). I know it's the right thing to do, but I'm pissed and feel like a brat...a LATE brat at that.

Still, I'm beginning to annoy myself with this behavior. It's wearing thin.

Wednesday, May 21, 2008

Scary Pretty Things

In my last post, I referred to my friend Troy's wife, Angie, as "scary-pretty." It just popped out, and now I find it a curious adjective. I could easily describe my sponsor, Mary, that way, as she has one of the most beautiful faces I've ever seen.

When we first met (at one of my first AA meetings), we immediately connected, and within five minutes or so, she offered to be my sponsor. I said an unequivocal "yes," but I couldn't help but notice her extraordinary beauty. With her long, blonde, straight hair, she looks like a California model cloaked in urbane Manhattanite high-fashion threads. As I walked home from the meeting that day, I wondered if I could actually spill my guts to a face that was so perfect without feeling some kind of intimidation or, worse, jealousy. I actually considered backing out of the deal with some kind of lame excuse.

But it took just a few minutes to have the insight I needed. How many times in my own life have I felt rejected or rebuffed because of my own gifts? While I've lost a friend or two due to my health ordeals (some just can't handle this kind of thing), what's actually hurt far worse have been the rejections when I was shining at my brightest. Whether it was a successful art exhibit, or my writing a memorable pop song, or looking particularly fine while wearing a clip-on ponytail, or--perhaps most important--just feeling a day of boundless joy, the no-comment commentary or the sly digs were deeply painful, at times even excruciating.

These are the things we do to one another when we feel insecure about our self-worth or our own gifts. That insidious character-erosion of those we supposedly care about is a deadly game, for sure, and it hurts both perpetrator and victim alike. Sadly, when I've shined a bit too bright, instead of it serving as an inspiration, some friends fell by the wayside. While their departure was ultimately welcome in the end, as I couldn't stand the stress of it anymore, it was also profoundly sad, as are most situations where communication crumbles.

As soon as I had this insight, any intimdation I may have had about Mary's looks vanished, and since then, I've discovered that the beauty of her soul far exceeds her external appearance, if that's even possible. She couldn't be more compassionate, intelligent, loving, non-judgmental and serious about her role as my sponsor.

And, perhaps not surprisingly, she has the face of an angel.

Lucky me.

Monday, May 19, 2008

Trojan Cows

My recovery pal Troy is holding my pain meds for me. I love his name, as I associate it with that warlike state from antiquity. Troy is tall, handsome and has a shaved head, as does his scary-pretty wife, Angie. They look like a beautiful salt and pepper set (he's light-skinned, she's dark).

I also associate his name with other things I like. One is the film "Troy," which actually wasn't that good, but it stars Brad Pitt, who's a babe. Also, one of my all-time favorite singer-songwriters (who's has a profound effect on my own songwriting), Sinead O'Connor, has a song named "Troy," which I never cared much for either, but as I'm such a fan, I gave her a pass on it. Come to think of it, she has a shaved head, too.

When I got out of rehab, I cut all my hair off. That's saying something as my long blonde curls used to get me cat-calls from passing cars, more often than not filled with hispanic guys who must like that kind of thing. It's so short that I sometimes think I should ask Troy and Angie to just shave the rest off for me, but I fear I'd look like a cancer patient, and I've got enough problems.

When I was in terrible pain the other day, refusing to take any medication so that I could "stay clean," Troy told me a curious bible story. Apparently, God had asked someone to kill one of his cows as a sacrifice. So the guy went and killed all of his best cows to show what a great guy he was.

When God came back, he said, "Why did you kill all your best cows? I only asked you for one, and it certainly didn't have to be your best!"

Confused by the meaning of this perplexing tale, Troy explained that we don't score extra points by suffering more than we have to. As I was still refusing to take any pain medication, even after the story, he bluntly asked, "Why are you killing all your best cows?"

Never one to argue with a good bible lesson, I went over and picked up a pain pill and that night felt much better. Can't say I'm much of a bible reader, but that was a fine story, indeed.

Sunday, May 18, 2008

History Repeating

The History Channel had a show on about the plague this afternoon. Half the population of Europe died because of it, and the surviving population was devastated psychologically as a result, questioning the meaning of life. I get this. Families watched one another die tortured, agonzing, senseless deaths. Talk about misery.

Not surprisingly, they all thought God was punishing their evil ways, but in watching this show with the wisdom of hindsight, it's clear that it was just a tragic thing that, well, happened. It wasn't God; it was a pathogen that half the people couldn't fight off. It spread from England to China, and some Christian Europeans began flagellating themselves, thinking that maybe inflicting more suffering on their bodies would somehow stop the insanity.

In my own case, I sometimes think God is punishing me, too, for some evil deed committed in maybe a previous life, or that he's trying to teach me a lesson that I somehow refuse to learn.

But if I'm going to learn anything from history, sometimes things just, well, happen. There's nothing inherently good or bad to the event. As humans, we're simply organisms prone to infection, like bugs, or dogs, or even the dinosaurs, who could actually get cancer.

Many desperately want to believe that things like disease happen to us because of stress, unresolved rage, because we're not spiritual enough, or because we're not understanding the mind/body connection. While there may be some truth to this, another truth is that bad things do indeed happen to good people for no reason at all. Accidents happen, disease happens, as does death. There's no escaping it. Believing there's reasons for it is simply a vain attempt to control it. If we can blame the patient somehow, then we think it won't happen to us.

The History Channel ended on a positive note, saying that the plague ushered in a new era of thinking. People began questioning the Church's authority, now defining God for themselves, and because of the loss of the work force, labor-saving machines were invented that were the very beginnings of the industrial age.

The most positive thing that developed was the beginning of the Renaissance--a rebirth of art, culture and science.

Like the plague survivors, I don't know about this God thing either. But I'm certainly not going to flagellate myself, nor blame anyone else for my misery. (The Christian flagellators actually blamed the Jews for the catastrophe.) The best I can hope for is some kind of rebirth of my own...a new person that will rise from the wreckage.

That's hard to fathom at the moment, as I'm still swirling in a haze of pain and addiction. The plague had to run its course, and perhaps my own dark days have to run theirs, as well. This has been going on for an awful long time, though. Years now.

I'm exhausted.

Thursday, May 15, 2008

Wager, Anyone?

I'm on and off the pain meds. Luckily, they're again entrusted to a friend so that I take them as prescribed. In my possession, they're absolutely diabolical. I watch my hand go up to my mouth with yet another pill as if I'm not in control of my own body parts. I suppose I'm not.

Yesterday, I attempted to completely go without pain meds, as I did most of the day before. When the pain went through the roof, I called my sponsor, Mary, which I don't often do. In pain, I tend to isolate as my emotions are so overwhelming that I assume they will overwhelm others. I cry so hard that I'm barely coherent. But I called, telling her that the reason I haven't been able to write down my perception of my Higher Power (an assignment she had given me) is that I feel there isn't one for me.

The funny thing about recovery is that at meetings, I'm often listening to people talk about how wonderful their lives have become with sobriety and this newfound relationship with their God. What's difficult is that I know exactly what they're talking about, as I had this exact relationship with my creator before this disaster set in. I prayed for my divine purpose (as opposed to what I thought I should be doing with my life), I surrendered vexing problems, my ego was far less involved in my life than it had been, and I was of service to my community.

All of these things are in the "promises" of the rooms. And I agree, when you live your life that way, it gets better. For the 18 months before my hemmorhage, I was happier than I'd ever been, and my life, although not perfect, seemed on a continued upward path towards betterment. I suppose I had some kind of hubris that with God as my co-pilot, what could go wrong? Really wrong?

Well, what went wrong far exceeded anything I could have ever imagined, and despite prayers and pleadings and countless affirmations, nothing changed. The pain was all-consuming and untreatable. I had to live with it 24/7. I went to bed with it and woke up with it.

And my spirituality ended up in the toilet, along with the question, "How could any loving creator create such potential for this type of suffering?" My answer was one of two things: Either there wasn't a God, or if he does exist, he certainly ain't loving.

So when I now hear all my recovery pals talk about their union with this great spirit, I think them delusional. They say they found God when they hit their bottom, thinking they'll never find themselves there again, or if they DO find themselves there again, it will be because of something THEY have done, like picking up. They often say of their darkest days, "God didn't leave me; I left God." They think God will never leave them now if they continue "to do the next right thing."

Oh, yeah? Wanna bet?

Thursday, May 08, 2008

The Company of Chemicals

The pain comes and goes in intensity, but even when it's less, my kneejerk response is to take pain medication, which in and of itself is a "cunning and baffling" beast, as folks in AA/NA are wont to say.

Going to AA meetings (I go to AA even though I'm a pill addict) at first was irritating, 'cause everyone is so damn grateful, positive and cheerful all the time, but now I'm hearing the message more. (I went into rehab for addiction to pain meds on March 19, coming home April 4. My success with sobriety so far has been mixed.)

What I'm realizing is that I haven't been all that honest with myself. Yes, the jaw pain at times can be excruciating, but when I take opiates for it, my resistance to smoking vanishes, and smoking, of course, makes any bone infection worse. Without opiates in my system, the idea of smoking gags me. With opiates, I turn into psycho party girl, and caution is thrown to about a 150 mph wind.

But then I end up in more pain, which makes me take more vicodin, which then makes me smoke. Talk about a vicious cycle.

The pills are also a curious type of friend. After rehab, I stayed clean for 30 or more days. But when a severe bout of pain set in, I crumbled. Since then, I've been off and on, having a new AA pal hold the pills for me. He's away for the weekend, though, and I just refilled the prescription. This isn't good. Pills plus me equals watching a lot of "Law & Order" episodes on the couch. Or "American Justice." An episode is on now about the Menendez brothers.

I once knew a gal who worked for Jose Menendez. We were business associates, and I remember the day I read a Vanity Fair article about the case, and Vicki was interviewed. I nearly hyperventilated, 'cause I love bizarre murder cases, and here I was, just one degree away from the Menendez brothers themselves. So I called her and pumped her for even more info. She said the brothers were brats and morons.

That kinda how I feel at the moment...like a brat and a moron. Taking pain medication makes me a one-dimensional shadow of myself. Yes, it relieves the pain, to some extent, but it relieves life's angst, which is where the art is. So I'm not making any art today, watching the Menendez brothers instead. What a waste.

Friday, May 02, 2008

The Bitch Is Back

Physical pain is indeed a confusing and diabolical monster. Ordinarily, pain is a good thing. It lets us know that something is wrong with our body; something needs our immediate attention, and pain sets our survival mode into high gear. Few thoughts can penetrate our minds when we're in pain, as its demands are all consuming: "Fix this problem, and fix it NOW." The worse the pain is, the shallower we breathe, the faster our heart rate goes, the higher our blood pressure goes, and the louder we scream.

This is all good stuff, as the body wants to get back to its normal state of homostasis, where everything is functioning on an even keel. But what happens when that pain trigger goes awry, or the condition setting it off won't heal or resolve? What happens when that pain continues day after day after day, despite all efforts to relieve it? That panic to control it, to fix whatever is wrong, is still there. And the pain's never-ceasing demands for our attention still screech and scream, often drowning out any hope that this will ever end.

When I awoke this morning, I had about a minute before my blood began circulating at full-throttle, at which point the pain returned in all its glory. I felt my heart sink like a cement shoe, and I've been white-knuckling repeated cravings for pain medication all day. At some point, the will falters and faith fails. Taking the pills will only set me back on this journey, I know, because when I take them, I take too much. They don't actually work for the pain; they just alter my reality so that I don't care about it so much.

Make no mistake...when it comes to this pain, I'm its bitch.

Thursday, May 01, 2008

The End of Days

It's May 1st. I can't believe it. Time flies when nothing happens. But that's not really true. A lot has happened this year. I went into rehab March 19 to get off painkillers and stayed for 16 days. They practiced the whole 12-step thing there, which has gotten me into the habit now of going to meetings.

They're very nice, and I love the people (who wouldn't love a bunch of former massive partyers?), but I find it somehwat humorous that amidst this scrappy bunch of misfits, I don't fit in. If only I'd gotten addicted to painkillers for any other reason than pain, then this whole program might mean something to me. I actually envy their connection to one another, and more important, to their Higher Power.

They attribute all their suffering to their former spiritual bankruptcy, their ego and their will. I attribute all of my suffering to untractable, untreatable physical pain, along with depression, despair and a complete abandonment by my "Higher Power." I'm open to the fact that maybe my ego or will or deficient spirit got me into this mess, but it's hard to see how all that can affect bone marrow. It hasn't affected anyone else in the rooms that way. Why me? (And please don't say, "Why NOT you?" JUST DON'T SAY IT.)

Which leads me to the title of this post, "The End of Days." That's right. This is it. My apocalypse of sorts. I'm done with this God thing. No more praying or surrendering or asking why or turning over my will, etc. IT DOESN'T WORK. True, when the pain gets awful, my prayers are of the foxhole sort, which are perhaps perceived as annoying or insincere to any higher power, but still, I need a break. I need an insight. I need money.

My AA pals say, "Keep coming back! Wait for the miracle!" Do they mean the miracle that will heal this jaw pain? Are they delusional? Or am I? Is there some profound connection I'm not seeing?

All I know is that I've been praying to a God who's unmerciful, cruel, sadistic and a bad listener. Time to change Gods.