The Drawing Board

a journey in chronic pain

Mary Ann Farley

Mary Ann Farley
Location
Hoboken, New Jersey, USA
Birthday
January 18
Company
www.maryannfarley.com
Bio
In 1999, at the very same time I was diagnosed with a serious blood clotting disorder (Essential Thrombocythemia), I also felt my face explode in a type of pain that no one could explain. After 13 months, I finally learned that it was osteonecrosis of the jaw (also known as NICO), a complication of the blood/bone marrow illness. I've had untold numbers of surgeries during this time, having spent most of it in pain. In 2004, the blood condition caused an internal massive hemmorhage during which I lost 70% of my blood volume, which in turn made the jaw infection much worse. This blog will detail my journey with chronic pain and all of its accompanying complications and emotions. I'll try to be as honest as possible without shooting myself.

MY RECENT POSTS

Mary Ann Farley's Links

New list
MARCH 27, 2010 2:16PM

Bitch-Slapping My Guilt, With Good Results

Rate: 18 Flag

I had a big insight.

There I was on Thursday, experiencing one of the worst pain days I've had since this whole ordeal began six years ago. Absolutely nothing I did worked to ease the burning and aching in my face, so I did the only thing that I knew for sure would bring me any relief, however slight it would be, and that was to take more pain medication. But with that decision came the usual overwhelming sense of guilt--that somehow I was being weak, was copping out and dropping out of life, disgusted at my fate.

The tears came easily that day, initially having been set off by a newsletter I regularly receive from author Annette Colby, a doctor who specializes in matters of the heart and soul, and who I’ve spoken to once on the phone and have had multiple email conversations with in the last two years or so. Her topic that day was a ten-step plan on how to bring more love and joy into your life, and it brought back such poignant memories of the happiness I was feeling before all this began.

I wrote to Annette to thank her for her words, as they’d set off the tears, for which I was grateful. I needed something to crack through the tension I’d been carrying that day, and was so thankful for the release. Annette responded with her usual compassion and wisdom, and then said something I didn’t expect. She said that if I needed to take the pain medication, it was a complete waste of energy to feel guilty about it, and that if and when the day came that I decided to stop it, I would, but until then, I should simply enjoy the relief it brought.

While this might sound obvious to some, her words truly altered my state. For the first time I can remember during the past six years, I decided that just for that day, I wasn’t going to feel guilty about any decision I made in order to cope with my pain, whether it be painkillers, cigarettes or wine. I saw very clearly that what I deal with on a daily basis is beyond what most people can even imagine, so why should I be judging my behavior in order to cope with circumstances so completely beyond my control?

*******************

Day in and day out, I live in such unchartered territory, which is why I’ve found so little solace in therapy or in programs like AA or rehab, where two years ago I did a two-week stint to get off the pills, only to find myself in agony again once I got home. The rehab experience was awful--not anything like one sees in shows like Intervention, as I was treated in the same punitive way that so many of these more ordinary places treat addicts--that we’re diseased degenerates who can’t be trusted and thus must turn over our lives to a supposedly loving god who will set us free if we just surrender our will.

While this approach may work for some, and I do respect it (despite my cynicism about that treatment center), for the addicted pain patient, this program just doesn’t work. No amount of steps or surrender did a single thing to alter the awful conditions of my life, nor did this loving god, who from what I can see, has dispensed far too much suffering upon this world to be taken seriously.

I suppose this is why I found Annette’s words so comforting, as she was putting her trust in ME--that I was the only one who truly knows what’s best for my pain, and therefore shouldn’t feel guilty about the decisions I make.

And so, for the rest of the day, I did whatever it took to bring me comfort, and a surprising thing happened. Without all of my energy being eaten up by pain and, more important, guilt, I felt a certain joyousness about life return, and I was shocked.

Suddenly, my thoughts turned to my art studio, which I’ve been attempting to organize ever since I moved into my new apartment here on Feb. 3. I couldn’t believe how effortless it felt to just go in there and start moving things around, as I was now eager to get started on a new painting. And every time I felt guilt begin to creep into my consciousness, I would say out loud, “Stop it!” and indeed it would just go away.

*****************

Curiously, two other things happened in previous days that perhaps laid the groundwork for Annette’s words. The first was a book I found literally in someone’s trash, titled simply enough, Meditation, which recounted meditation techniques by a famous instructor named Osho. There are descriptions of about 100 different meditations, one of which is for smoking, in which Osho describes the plight of a troubled man who had chain-smoked for 30 years, and had come to him looking for guidance on how to stop.

Surprisingly, Osho told the man that he should NOT stop, but instead smoke every cigarette with complete attention and consciousness, as it was the thoughtless, automatic behavior that was the problem, not the cigarettes. If the man continued to smoke, Osho told him to just enjoy it, as what did it matter if he lived a shorter life as a result, but if he stopped, Osho said it would happen effortlessly, and of course, it did. In short order, through conscious meditation on his smoking, the man soon saw the insanity of his behavior, and he was able to quit.

The second occurrence that alerted me to the destructive power of guilt was a few web sites I stumbled upon completely by accident that challenged whether or not Jesus Christ ever actually lived, as apparently, there’s absolutely nothing in the historical record about his existence. Yes, there are the gospels, but supposedly there’s nothing else--no stories written by the historians and writers of the time about this man of miracles, no record of his execution by Pontius Pilot--stuff like that.

I know so little about this subject that I bring it up not to invite debate, but to recount the curious effect it had on me. What if Jesus Christ never did exist? What if he was nothing more than an archetype created by the collective unconscious in the same way other deities have been created over the course of history, like Zeus? It’s indeed a fact that Christianity isn’t the first religion to speak of virgin births and resurrections, so what if the indoctrination I received as a child (which sometimes fills me with superstition to this day) was all a fabrication?

Over the course of the next few days, I could see that my guilt was also born of fear of sinning against this god of my childhood--that I was living an evil existence, even though the circumstances of my life were not of my own making.

********************

So what’s the upshot of all this? Well, yesterday was probably one of the happiest days of my life in the past six years. I treated my pain as I saw fit, fully willing to accept any consequences of my decisions, and I did not allow myself to feel any guilt whatsoever about my actions.

And with that came joy. When I went to bed last night, I was so eager to wake up this morning that I actually couldn’t fall asleep, as if I were a child tossing and turning on Christmas Eve.

While having my morning coffee today (coffee being yet another thing I’ve been berating myself for), I eagerly jotted down a list of things I want and need to do today, and instead of it feeling like a weight, the list feels like, well, a life.

There’s nothing extraordinary on it--just ordinary tasks to do on an ordinary Saturday--and for once, I’m actually looking forward to starting my day.

I can’t remember the last time I said that.


***********************

Your tags:

TIP:

Enter the amount, and click "Tip" to submit!
Recipient's email address:
Personal message (optional):

Your email address:

Comments

Type your comment below:
I am glad to find you happy, hopeful. I had come to this decision also but differently and for much less pain than you feel. My thoughts were if I truly hurt after a wonderful walk with my dog and working in my yard then take the stupid pain pill and get on with life. My pain may diminish with weight loss, so I have hope, a plan. It sounds like you do now too! This makes me smile.
While I can't speak for religion, because I don't believe in organized religion, I can speak for the pain. I take my pain meds the same way I take my blood pressure, or cholesterol medicine. I don't see where there is a difference. I don't get high on pain meds. I take them as ordered and treat my pain the same as any other ailment. It works for me most of the time. Of course, there will be break-out pain, and you have to adjust, but to sit and hurt while there are things to make you not hurt doesn't make sense to me. Have a great day my friend.
"Well, yesterday was probably one of the happiest days of my life in the past six years. I treated my pain as I saw fit, fully willing to accept any consequences of my decisions, and I did not allow myself to feel any guilt whatsoever about my actions."

Bless you, girl and congratulations. Rated
guilt about things one must do/have is crippling. i am very happy that you have hit a place where you can get beyond the guilt and let the medication just do what it's supposed to. (r)
This post is both moving and powerful. I'm not religious, but if I think of Jesus as a compassionate being, I'm sure he would tell you to manage your pain--in whatever ways work for you--without guilt. Glad you're back in the studio.
Ah I wish you were in Ohio! The conversations we could have!

So glad to hear you're feeling "okay" (I know, "well" may be a stretch) and that you're able to allow yourself to break through the pain with some thoughts that help you extend beyond just your situation.

As for guilt, I never saw the point of feeling guilty for doing something to improve our lives, so long as our attempts at self improvement don't harm others

Go for it!!
I agree that you should feel no guilt for taking pain meds that you need! You are not trying to to feel high-you are trying to feel NORMAL. You deserve a release from the pain.
As for Jesus, I am, of course, no expert. There was a historian named Josephus who lived after Jesus and who made mention of him. There are those who believe that this authenticates Jesus and those who believe that this doesn't. My faith has gone through many stalls, fits, and starts. I have found that I have to sift through the voices of my past and some of the voices in my own head that tried to speak for God. There are so many people--whether they are against the Bible or for it--who cherry-pick verses and distort the meanings. I used to hate to study the Bible, but with the right teacher, I have grown to enjoy it, almost as if it is a different book than the one I disliked even a few years ago. I still have my struggles in life, but I see them in an increasingly different light as I study more.
What you said about complete attention--that may help my eating. I need to sit and take time and experience it and pay attention. I need help, believe me, I am ashamed to say.
Pain is evil. I absolutely believe that. Never feel guilty about fighting evil. That from my wonderful Parish Priest.

Pain is a disease. So pain will kill you just as any other disease. That from my Pain Dr.
Rated.
i am so so happy!

by the way, for some reason your message came up in my inbox as spam???
Ohhhhhhhhhhhhhhhhhhhhhhhhhhh good. Good. Good. Good.

Several years ago I had an experience with my neck that was very very painful. More pain than I could possibly live with. Thankfully my kind doctor taught me about pain management and the thought and science behind it. I learned just what you have learned, about the energy that goes into fighting pain and living with it, and how once the pain gets ahead of the pain killer it won't be stopped. I have used his advice and knowledge ever since when it comes to pain management. And no, guilt never ever entered into his explanation at all. It was strictly science.

Much love to you, dearie.
My dear dear OS friends--Your comments always fill me with such encouragement and love.

I suppose my guilt stems from the amount of medication I take, along with my other bad habits, like smoking, vino and caffeine. The amount prescribed just isn't enough, so I often take more than I should in order to get comfortable, and early on, I was so depressed that the pain meds provided an emotional escape as well, something that hasn't completely gone away.

So painkillers have been a complicated issue for me, hence the guilt. Of course someone with a clotting condition should never smoke (big guilt there) and my morning blast of caffeine sets off the desire to smoke and simply makes my system more acidic overall, which contributes to pain.

In having this insight, I realized that just about every moment of the day, I was feeling guilty about something...first the coffee, then the sheer amount of meds I take to get moderately comfortable, then lighting up. Oh, and then later in the day, pouring myself some wine on top of everything else.

I was feeling like SUCH a loser, especially when the combo of everything knocks me out into a mid-afternoon or early evening deep sleep.

So it's not just the issue of taking pain medication. My condition is so severe that sometimes I DO take the meds, if not to get high, than certainly to give me an emotional lift that makes me feel somewhat like myself again. As I write that, I think that's the element that makes me feel the most guilty--like I'm cheating my way into feeling good.

But you know what? For now, I'm just taking a guilt-break from it all. Maybe I AM cheating. I've done everything I know how to get myself to a good place without painkillers--it's been a long arduous journey, and one that continues. (I'm now going for biofeedback training in NYC twice a week.)

But as Annette suggested, I'm just embracing my decisions for now. I'm just so tired of beating myself up. It's wasting time, and if I croak like so many of these celebrities recently who die of drug combinations, than so be it. I didn't "party" my way into this situation; I'm simply trying to feel better the best way I know how.

To anyone who reads this addendum, thank you so much for bearing witness, truly. OS has become a big part of my journey, and I'm just so thankful for all of you.
I so appreciate the message here: radical self-acceptance. It reminds me of that song: "Whatever gets you through the night, it's alright. It's alright." Which becomes: "Whatever gets you through your life, it's alright. It's alright."

Let's hang that stupid judge living in our mind - the one creating the REAL problems.
I'm so happy that you found something to give you relief--and joy! Oh joy, which you have missed for so long. I hope you can hold on to these feelings and remind yourself that they are there for you.
I've read some Osho - I like his take on things for the most part. Now I want to check out that book, as well. I think the non-judgement can be an extremely powerful tool - and I'm so glad you're trying that angle. Sending good energy your way!
Oh dear Mary Ann......I can relate to your paradox. I recently had knee surgery and even though I possessed a bottle of vicodin that was prescribed to me, I only took two. Never mind the excruciating pain that I was experiencing, I refused to let another one pass my lips.

In retrospect, I believe that subconsciously, I was punishing myself for allowing this to happen. If I had more self control of what I put in my mouth, surgery wouldn't have been necessary. My surgery was the embodiment of my hand to mouth disease and who was I to try to lessen the pain? I made the bed, now I had to lie in it.

I had resolved to do something about the weight before the surgery, so I had to realize that it was foolish to deprive myself of the opportunity to put my plan into motion...to exercise and lose the weight. There is no glory in self punishment...it keeps you from doing what you must. This week will be my first week to start exercising....but thankfully, I have already lost 9.2 lbs in less than 7 weeks...without exercising. I can't wait to see what happens now.
Truly, Mary Ann, u r one of my heroes. If i were living your life, the ONLY way i could is by starting each day asking myself "what is the most compassionate thing i can do for myself today?" what is the most compassionate way I can live my life and enjoy myself? NO GUILT ALLOWED, FER SURE. it took a long time to get there, but so rarely does guilt actually HELP. if it did, ok then. but it doesn't serve, so it gotta go.
So u r my hero cuz u live in a place i don't ever want to be, and u write about it in a way that i am jealous of your writing. Peace be with you. Ann