Hotel Heaven

The pain is overwhelming today. I thought I was really onto something with my last post, and maybe I am, but that doesn't console me right now.

Pain like this is ruthless, brutal, cruel. A few days ago I was on top of the world, which makes this crash all the harsher.

It's hard to know if those insights were real, or if they created just a temporary placebo effect, which has happened to me in the past. The muscles and tendons are still very relaxed, but the localized jaw pain is fierce.

Regardless, I've applied to NYU's psychoanalytic institute. I've got to keep trying, but this sharp increase in pain is crushing; it makes it hard to think let alone take some kind of action.

Last night, I took an oxycontin (10 mg), an advil, a xanax and a few drags of pot, and the pain went away completely. When moments like that occur, it's like the pain never happened. I immediately snap back to myself and my joyousness soars. Instantly, I begin enjoying just normal life stuff, normal life thoughts.

Today, I find myself threatening God, saying that if someone up there doesn't help me soon, I'll be checking in to Hotel Heaven in the not-too-distant future, not out of despondency but logic.

Many people with my condition have killed themselves. In fact, when this first struck in 1999, I joined two different online support groups, which was a disaster. People were so devastated by their pain that all they could manage to write was their misery. It wasn't a true support group, where everyone is helping and uplifting each other, but instead a dumping ground of human agony.

I tried to be cheerful and upbeat, but then one of the patients in the first group killed herself. Her husband wrote in to say that she'd just reached the end of the line and took herself out. Needless to say, I immediately opted out of that group.

But then the following week, a patient in the other group also killed herself, and my blood ran cold, mainly because I so completely understood why she did it. I understood why they both did it, and I realized that this pain was potentially fatal.

What's a little spooky is that a few weeks ago, I had that awful premonition again, the type where I suddenly can't see my future. I didn't tell anyone because I talked myself out of it. But I have to be honest; it happened, and now here I am feeling that I just can't go on. I'm not sure I want to. There's nothing left in me; no hope, no will, no motivation.

In my 20s, when I first began therapy, strange and wonderful things began to happen in my life, where something would meet me halfway in terms of the things I wanted to accomplish.

The first instance was my desire to find a music studio, so that I wasn't doing it in my bedroom all the time and potentially bothering my three roommates. When I thought about what I wanted, I thought of a small, separate room in my building that a writer had been renting for years. When I opened the paper to look for rental space, one of my roommates joked, "Are you looking for a new apartment?"

When I told her I was looking for a space similar to the one rented by the writer downstairs, she told me that she'd just seen him moving out three days prior. I thought it an incredible stroke of luck, and took over the space.

But then these "coincidences" began to multiply. Over and over, I was startled at how doors were opening up for me, and I began to tally up these experiences. I didn't know what it was, but there was a true force at work.

In The Power of Myth, Bill Moyers and Joseph Campbell call this force the "helping hands" phenomenon. The only explanation I could come up with at the time was that when we follow our bliss, we tap into something extraordinary, and I began to understand the notion that "God helps those who help themselves." It seemed that when I took risks to follow my dreams, there was something there to help me, and it was something I knew I could actually count on.

I suppose my problem now is that I have no dreams anymore. There's no bliss to follow. I'm caught in some kind of negative vortex where I'm completely left to my own devices. The helping hands are gone, and I don't know how to get them back.

The writer in me wants a happy ending to this story. I would love to find my way out of pain not just for myself, but to provide a type of road map for others who come after me. But I'm beginning to feel clubbed to death. At some point, I just won't be able to stand up anymore.

Prayers are welcome, because right now, I can't even pray. Please see my future for me.


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Full Speed Ahead

Something remarkable happened this week, and I'm almost superstitious about reporting it.

I had an insight, which was this: How I feel about this pain, every single experience I have of it, precisely repeats how I felt in my childhood. The pattern is almost an exact recreation of the players and the situation I knew growing up, the most difficult of which was my relationship with my dad.

Here are some correlations:

• I’m fighting an enemy that no one can see. I look fine, yet I’m terrorized daily. (No one would’ve ever believed my dad was the tormenter he was. People considered me “lucky” to have the life I did.)
  
• I’m oppressed to the extent that I can hardly think about anything else. Expressing myself creatively takes an extreme amount of energy, and living/enjoying life is secondary to dealing with the pain (dad).
  
• I’m struggling just to get through the day.
  
• I feel punished for an infraction I don’t understand.
  
• The pain (dad’s rage) comes and goes for no reason at all. It’s not at all dependent upon what I do or don’t do.
  
• The pain (dad) crushes me with ruthless abandon.
  
• I don’t see anyone else suffering like this, fighting an enemy like this, so I’m all alone with it.
  
• I don’t feel protected.
  
• No one can help me.
  
• I feel like something is inherently wrong with me, which is why all this is happening. I must deserve it. I must have done something.
  

The list could go on, of course, but when I saw so clearly that this is a repeat of a pattern I’m deeply familiar with, I could see that the relationship I have with this pain is the relationship I had with him.

All of my adult life, I’ve been sick with something; when one thing would resolve, something else would emerge to torment me. The torment has gotten progressively worse.

What’s particularly astonishing is that my dad nowadays has given up on life. He had a small stroke ten years ago that profoundly affected him emotionally. He sits and watches TV all day, unmotivated to do anything.

What have I been doing all month? Sitting in front of the TV all day, unmotivated to do anything.

I can see so clearly the maladaptive patterns of others in my life, but I’ve never been able to turn that same eye on myself to the extent I did this week.

Suffice to say, I’ve been working hard on all this, testing the theory that this pain is surpressed rage, which was a belief of Freud, proven to a large extent by the work of Dr. John Sarno at NYU, who’s cured thousands of back pain and other chronic ailments by helping patients understand the connection. (See the book The Mindbody Prescription for more info.)

When I had this insight, I dare say it was one of the most profound I’ve ever experienced. It all made so much sense, and I felt absolutely flooded with light when it occurred. As long as I focus on this pain, I’m not focusing on the other issues of my psyche. In fact, I dare say that I haven’t revisited them in the five years this has all been going on. And this coming from a woman who LIKES therapy, who’s spent years in it.

Since all this happened, the pain has changed dramatically. It’s far more localized now, and all of the knots in my jaw and neck have diminished significantly.

Sarno says one must be diligent daily about spending time in reflection or meditation, bringing into consciousness the rumblings we feel deep within. We don't have to exactly know what they are or how to resolve them, but we must give them a tip of the hat, so to speak. We have to at least feel them so that they're not driven into avenues like pain.

I've known for years that some important issues have yet to be resolved for me, but as they can make me feel so broken, I was starting to write them off, saying that maybe there are certain things one just can't heal from and we have to learn to live with it.

Curiously, I've made these same exact statements about my pain condition.

I've applied for NYU's psychoanalytic program, which is different from psychotherapy, as you must go multiple times a week. Even if I don't get out of pain, these issues must be addressed if I'm ever going to have a full, loving human experience.

The pain has postponed this leg of my life journey for awhile now, but how much longer can I expect to just drift in confusion?

I'm excited to see where all this will lead. I'm feeling shaky about it, which I suspect means I'm on the right track. At the very least, I'm on a new and shiny track, which beats the current rusty one that has me at a full stop.

Full speed ahead.


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Sleeping With the Enemy

I've been reading a lot about Buddhism lately and I like it. It doesn't mince words. The very first thing Buddha teaches is that "life is suffering," and the religion basically goes on from there. What a concept. I suppose it's not surprising that I'm drawn to a religion that takes on pain as its basic tenet.

While I've been reading all kinds of wonderful spiritual books these past few years, Buddhism speaks to me on a different level because it says, basically, that if I can be patient and accepting of what has befallen me, I can ultimately find a way to peace, contentment and enlightenment, even nirvana, whether chronic pain is in my life or not.

This so much echoes my own discovery about the power of acceptance, then adds to it by assuring me that the pain doesn't have to go away for me to be happy. It offers a place that is deeper, softer, stronger, where I can just let go, detach and rest.

I've already experienced this somewhat on nights when the pain is just so bad that I'll quietly lie down somewhere and just let everything go. I'll stop fighting the pain and tell it to get as bad as it wants to get, and sure enough, something does happen physiologically. As I calm down and breathe, sometimes it will begin to throb (in a good way, as if the blood is getting to where it needs to go), which is when I just detach and observe, then imagine tending to the infection site with cool water and gentle cleansing.

This brings to mind a doctor I once saw on TV, who hypnotized pregnant women who'd previously given birth in nightmarish deliveries. The idea was to get them to work with their labor pains, as opposed to fearing or battling them. Not surprisingly, the two women featured in the show experienced flawless deliveries using this self-hypnosis, where each was quietly at peace giving birth while other labor-stricken mothers were screaming bloody murder in adjoining rooms. One scream, in particular, sounded like the poor woman was being hacked to death, which stood in such stark contrast to these incredibly peaceful deliveries.

I've thought of that show often over the years, but my fear of this pain was too overwhelming to think self-hypnosis could work for me.

That's the operative word here: fear. When we don't understand what's happening in our bodies and we can't find relief, we can feel invaded, in a sense. We're battling a monster we can't see, can't find, can't conquer. In the battle to vanquish this enemy, we can go to war with our own bodies, often finding solace and escape in substance abuse and other bad habits, only to find that we're pouring gasoline on the fire.

In meeting with my life coach Nancy Colasurdo this week, I was able to admit that I'm just not taking care of myself anymore. I've been giving in to this loss of appetite by not eating, but as Nancy pointed out, this decreases my energy all the more. And it lowers my resistance to any type of infection, which perhaps explains the increase in pain. My body can't deploy its own defenses with so little nutrients. I need to have faith that with proper care, my body will assist in this battle handsomely. I need to work with my body, and that means personal responsibility.

I can't ask God or any universal spirit for help when I'm not willing to do my very best to help myself--when I don't want to do the right thing--which is rid myself of the self-abuse habits that are harming me. It's so obvious that I feel just plain stupid at not having had the insight sooner.

So I must work with, not against, my body in all ways if I'm ever to overcome this pain. Come to think of it, that's just a good way to live in all matters.


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Chaos Theory

I have a piece of paper taped to my wall next to my drawing desk, on which I long ago scribbled the definition of chaos theory: "The more complex the pattern, the simpler the underlying reality."

I heard it on TV once, and I read it often, as science and the human condition always seem to be so relative. Truth is truth, whether it be a mathematical formula or a divine insight. I find comfort in this definition of chaos theory these days, because deep in my soul, I do feel that there is an underlying truth in all this pain, and it's my job to figure it out.

Of course, I'm sick to death of trying to figure it out, and often come to the conclusion that I'm just unlucky--that there's no grand design to all this--I'm just a single human who drew the low card and nothing will change until I get a lucky break--when I'll find the right treatment or the right doctor who will help me get well. And that'll be that. No divine involvement whatsoever.

But then another one of those strange interventions happened again the other day, which challenges my notions of nothingness. I've talked about them in previous posts, where I'll get a strong premonition or warning that alerts me to danger and alters my behavior to the extent that I actually avoid disaster.

Here's what happened this time: Every day I get a digest post from the online blood support group I joined years ago. I read it faithfully for years, but as the posts tend to get repetitive, I haven't opened or read any of them in a good six months or more.

Last week, though, something made me open the email, and in the list of topics was a warning about a drug that I'd been taking for nausea--Reglan. It said that new studies had shown that Reglan can cause permanent damage to the nervous system when taken in high doses or over a long period of time, the latter of which applied to me.

As the drug cocktail I take every day can sometimes bring on nausea, I was taking Reglan every morning whether I had nausea or not, just as a precaution, so that I didn't find myself out and about somewhere and suddenly need to vomit.

Yet when I read this warning post, I was shocked at the damage Reglan can do, and immediately stopped taking it.

Later, I thought it extraordinary that of all the posts to open during the last six months, that was the one I chose, and once again, I felt like something "other" had intervened. I suppose I could just call it a coincidence, but when similar coincidences happen over and over, a pattern emerges that challenges logic.

I feel like there is something out there keeping me alive, which frankly feels somewhat cruel, considering the state I'm in. In the last few weeks, the pain level has skyrocketed to the extent that it's there when I go to bed and there when I wake up. My despondency feels like a ten-ton weight, and thoughts do cross my mind lately that I could always just end things. I do have that choice, and I know things are bad when I begin considering such a move as an option.

I love life so much though, and then I think of my little nieces who adore me (and who I love more than words could describe), who would be left without their nutty aunt for the rest of their lives. And so I hold on. These "interventions" are keeping me around for some reason, and I'm trying to have faith in that.

I'm still swirling in a state of chaos, though, trying to believe that there is a simple underlying truth to it all that will set me free, as truth always does.

But my energy is fading, to the extent that I've completely lost my appetite. When eating feels like a monumental task, the other things I know I must do to try and get well feel like lifting cement boulders.

It's time to reach out for help. Friends have offered assistance constantly, and I know they mean it, but I suppose it's tough for me to admit that I'm actually this weak right now, and that I can no longer do this alone.

I don't know that that particular truth is the simple one that can explain all this chaos, but it's the truth today. Time to make some phone calls.


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No Magical Thinking Allowed

I think I'm losing it. Seriously. The pain level has mysteriously upped a few notches, and I'm just beside myself.

I got up at around 4 a.m. to go to bed (my cat woke me up from the couch) and it struck me while walking to the bathroom that my whole life has become about this pain. I'm just so drained that I don't even want to do the things I use to love so much. They don't interest me right now, and all I really want to do is ramp up the medication to a point where I'm just plain numb. That's no kind of life, of course, and with one false move, it won't be any life at all.

What's so strange about this whole debacle is that the existential questions forced upon me are questions I've been asking for as far back as I can remember. Who are we, us humans? And why are we here? I can actually remember thinking this stuff as a teenager, which I thought for sure was evidence that I was going insane as I didn't see anyone else fretting like this.

Don't get me wrong: I was all teenager and filled all the prerequisites for those years, but I always seemed to have a third eye at work, just observing everything from a curious point of view. When trauma and depression set in, this curiosity first evolved into dissociation, where I truly felt like I was a ghost in the room, and then it morphed into just plain anxiety. (This may, of course, say more about my upbringing than my curious nature.)

I suppose my point is that I've never been able to just set this existential quandry aside for any extended period of time and just relax, just enjoy. And so much of it, as it appears from where I sit now, has been about faith.

When I was a kid, my questions may have erupted from dissatisfaction with my Catholicism, where God was harsh and the nuns were harsher. If this was what God was about, I wanted no part of it.

But as I got older, I did find faith through the writings of Florence Scovel Shinn, who taught me how to affirm and pray and surrender, and I watched my life expand in glorious new ways. In fact, my journal entries during this period are almost heartbreaking to read, as they're so joyful, so full of humor. When I read them now, I can almost hear a brooding soundtrack in the background as a type of foreshadowing of what will soon befall this happy hapless victim--mainly, an abandonment so complete by who she thought was her God that she ended up in a mental institution.

I've been thinking about Jesus and his words on the cross after he'd been crucified, when he asked, "My God, my God, why have you forsaken me?" I don't think God answered him, and he certainly didn't provide him with a happy ending. I suppose one could say that Jesus then rose from the dead, and that's supposedly happy, but I'm not really sure what all those Bible stories are ever getting at. Is the lesson here that I'm supposed to endure a painful life, die an awful death, then be reborn with God? Who cares?

At least Jesus only lasted three days on the cross while hurt and pissed off. I've been bearing my own cross for five years now, and to a lesser extent, the four years before that. Enough already.

Once again, I'm coming to the conclusion that no god is going to get me out of this. Either I'll get out of pain or I won't. No magical thinking allowed.

I've known about a surgeon in Burlington, VT for awhile now who treats this, and he's come highly recommended.

I've waited out the winter to go see him, due to the weather, but it's time now to stop all this intellectual crap and just make an appointment, debt be damned.

I'd love to think that I could get well magically, through faith or faith-healing or resolving some long ago hurt that is really the key to all this, as that would ironically give me some sense of control. If I have the surgery, it will either work or it won't, but if I could resolve this in some other way, I suppose my faith would be restored, and I could go back to a more innocent existence.

I'm in a dangerous place tonight. Last week, I felt on the brink of something good, but now I just feel on the brink. My heart is breaking and I'm not sure how much more of this I want. I'm sick of being brave. I'm sick of enduring, of hoping, of trying. I'm just sick, and it's no way to live.


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Using the Monster

Sometimes I think this illness is just a waste of time, a waste of energy, a waste of potential, until I remind myself that as long as I keep up this journal, none of the journey is wasted, particularly if it can help another person.

It ain't easy, though. And it's certainly not an assignment I ever would have asked for. As a young person, I always thought my "hero's journey" would take place on a grander, far swankier scale. I'd become some celebrated singer/songwriter, and that's where the drama of my life would unfold. That's how I'd fulfill my destiny--by writing and performing songs that would enchant and connect, as others' songs have done for me. It was a singular quest for many years, but all along, something about it just didn't feel right.

Strangely, as I was going through it, I somehow knew that I would not succeed commercially in music (despite the wonderful and worthy songs that came through me). Something about that world wasn't a good fit, yet as I'd never seen myself in any other role in life, I would just trudge on, even though I didn't like the path.

I loved writing and performing, but I hated touring, and I hated the music business. I also hated the deep-seated sense of unworthiness I felt nearly all the time, which in hindsight was my true enemy. When we feel we're unworthy of good things, we don't get them for sure. It pains me now to think of how much I dressed down during those early performing days (hiding in plain sight) and that I didn't celebrate this nice Irish face and slim build that I've been given. (You can bet your ass I'm enjoying it now.)

I worked on these unworthy feelings for years in therapy, and slowly things began to change for the better. But with these changes came also the realization that what I was really looking for in the music business (as opposed to music itself) was some kind of validation, my own version of keeping up with the Joneses. And, of course, no one can give you that; you validate yourself.

While it's been liberating to have had these insights, I do wonder these days where I fit into the grand scheme of things, which was so clear to me years ago. No amount of painkillers today has been able to even make a dent in this pain and I feel devoured by endurance.

At times I feel wistful for all the things that I could potentially be doing without pain or illness. My art studio beckons daily, as do countless creative ideas, all of which are lost without me--a realization made all the more poignant by my awareness of having hit the half-century mark. The future is shorter now, and I can no longer live in the land of "someday," which is so often the refuge for the young when frustration sets in.

My somedays are getting fewer, so I suppose the real trick now is to somehow turn my "somedays" into "todays," to work with what I've been given instead of mourning for what could have been.

A well Mary Ann would be working on those new paintings, taking flying lessons, dating, seeing family more (especially my nieces), volunteering, and going to flamenco classes two or three times a week.

But this Mary Ann is in constant pain, which, whether I like it or not, has put me in a place where I must accept without crumbling; where faith has been challenged; and where I watch a lot of TV. What an assignment.

This morning, a television ad came on for Batman Begins, and this text came on the screen: "I'm using this monster to help other people."

I don't know that this journal will ever help anyone else, but one thing is for sure: I'm using this monster.


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