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.

Mary Ann Farley's Links

Salon.com
JUNE 9, 2009 10:31AM

The Taming of the Blue

Rate: 25 Flag
It's been a little over a year since I wrote my History Repeating post about the plague that engulfed Europe in 1347. Like a number of essays on this blog, it was inspired by a show on the History Channel, which just happened to air again yesterday.

I was just as fascinated with the program as I was 13 months ago, but what was even more intriguing was my very different response to it this time around.

Last year at this time, I was in such a state of profound questioning about God, railing against life's unfairness, and feeling that I'd somehow been singled out by my creator to suffer extreme and unending pain for reasons known only to him. My intellect grappled with this daily, on the one hand clearly seeing that I was just an unfortunate victim of circumstance, but on the other, feeling some deep sense of deserving this punishment, and maybe more hopefully, feeling that this was part of some divine plan designed to teach me something profound.

In hindsight, no matter how you look at it, any response I was having was tremendously self-centered, and I say that not as a self-criticism, but as a simple, if uncomfortable, observation.

Of course, it's natural to focus entirely on oneself when physical agony sets the tone for the day, but all that grappling with profound questions has led me to a curious state of being indeed, and one that I didn't at all expect, for in all my questioning about God, the place I'm being led is not to the heavens, but back to earth, upon which I feel like I'm walking for the very first time.

I've always been somewhat of a heady character, and in fact used to joke that my body was the thing that simply carried my head around. In being a creative person absorbed in the arts, I was always writing songs or painting pictures, and when I wasn't doing that, I was pondering the after-effects of therapy in order to unravel a more happy existence. In short, my head was in some very stormy clouds nearly all of the time, and the world around me was something I witnessed but kept at a distance, as I was the star of the show, so to speak, slightly removed and certainly above the mundane world of ordinary folks.

In short, I suppose I was something of a snob, albeit a nice one, but my niceness in no way affected my ambitions to be bigger, bolder and better in nearly everything I did.

What a moron.

I can see this so clearly now, and while a little embarrassed by it, I couldn't be more thankful that this old crusty cloak is slowly disintegrating all around me, and I do have to wonder if this horrible, awful, painful ordeal has had anything to do with it.

Two weeks ago, I had yet another surgery on my jaw, and by all accounts, it seems that my attempts to rid myself of pain have failed yet again. In fact, I may have even made matters worse, as the wound and bone refuse to heal.

This landed me at a local hospital's wound center last week, where I'm on deck (if Medicare approves it) to receive treatment in a hyperbaric chamber, which will be six weeks of being locked in a pressurized glass tube three hours a day. I'm told that this will force more oxygen into my system, thus destroying all bacteria and fostering growth of new blood vessels. Apparently, my chances are 50/50 in terms of pain relief, which before might have depressed me, but now...well...I'm not sure it matters which way the wind blows.

I felt this same way just before my surgery, in fact, which was in such stark contrast to so many of the other surgeries these past five years. I used to pray so hard for a positive outcome, only to be devastated when those prayers weren't answered. In many ways, I felt exactly like the plague victims, who turned to God and their faith for relief from their terrorizing torture, only to be ignored and left to their own devices. Clearly, the god of their understanding became irrelevant when it really counted, just like my own understanding of God and faith faltered when the going got tough.

When I take a closer look, I can see now that I was asking all the wrong questions and focusing on (and praying for) all the wrong things. While it was certainly appropriate and understandable for me to rage at my fate, I can see now that this ordeal has taken me completely out of my head and landed me squarely on my feet, where I now feel the dirt and sand between my toes in ways I never have before.

What's so startling is how I now move in my world. Despite the pain, no matter where I go, I seem to laugh and talk with just about everyone, and I'm quick to help when I see someone in a jam, whether it be a mother struggling to get her baby stroller up the subway steps, or an old lady waiting in the rain at a bus stop, who I pick up and drive home. I hate to think that I didn't help in these ways before, but what I'm guessing is that I just didn't see these situations, as I was too blinded by heady concepts and my own ambition.

In a waiting room the other day, for example, I began playing with three little brothers as if I'd known them my whole life, and in short order had everyone in the room laughing with our antics. The connection was instant, strong and barrier-free. I complimented their mom and dad on their beautiful family, and was warmed by the very thought of these three little devils for the rest of the day.

This may not sound like a big deal, but I can't really remember this ever happening before. When I say I talk with and smile at everyone, I mean everyone, and this glorious, bustling city I live in provides ample opportunity to flex my new friendly and outgoing muscles. I crack wise with cops and politicians, I have coffee with artist friends at local cafes, and I thank my bus driver after every single ride.

Oddly enough, as I write this, I'm actually having a very bad day. The pain is as bad as it ever was, which often leads to combustible outbursts of tears and long periods of sleep.

In a sense, the malaise and sadness about this condition haven't changed, but what has changed is that I don't expect to not suffer anymore. When I look at the world at large, either now or in the past, great suffering certainly isn't anything new, or anything unique to me. Maybe the trick to my ultimate contentment will be to be at rest with what is and to use that as the stuff of glorious, creative absorption, which is, of course, the ultimate painkiller.

It sounds so simple, but it's quite hard for me not to define myself by my accomplishments. No wonder this pain has caused such suffering on so many levels, as it has forced me to sit still and think, to rest, to just be. For so long, I felt like my accomplishments had to be huge in order for them to matter to the world, to make a difference. I'm only beginning to see that a smile exchange with just one person can light a spark for us both that can illuminate an entire hour, or more.

I should know in a day or two if Medicare will approve the hyperbaric treatment. If that does happen, I'm not expecting much, other than some claustrophobia and maybe some nice encounters with staff, who I suspect I'll get to know quite well. Maybe there'll be some kids in the waiting room.


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Comments

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What, whatta giant PIA. I hope you get the treatment and it goes well for you. Interesting post, Mary Ann.
Your pain sadden me; your enlightenment reassures me that you are indeed a kind, wonderful person. You are in my thoughts!
This is an awesome post. Loved every word of it. The hyperbaric chamber should not be an issue. You won't feel the pressure. It's just like scuba diving in that regard, but it sounds like you've learned to smell the roses along the path of life. THAT is what living is. I wish you all the best in your recovery. Hope Medicare comes through for you. What a trooper.
Mary Ann, Am I glad to have a fellow "Painiee" back with the pack, where you belong. I've missed you. Hyberberic chamber. Damn. Look at the up-side. Three hours to meditate. Think about future OS stories. Think about life. Think about anything but that damn pain. Hurtin' a little myself today, so I decided to go and meet a lot of new people on OS. Some newcomer's that people disrespect. Don't notice. I know the feeling. Doesn't take but a couple of minutes to make someone's day. Just like you and the three girls. I wish I had been there. Gotta go, I wish you a pain-free night. As a matter of fact, that's an order, private. Ha!
"it's quite hard for me not to define myself by my accomplishments. " Your accomplishment is huge, Mary Ann. You´ll be in my thoughts, maybe that helps a bit in your new treatment.
Kisses, girl;
Marcela
What is life? It's an honor to read this beautifully crafted and truthful piece.
What a brave soul you are! I wish you the best in getting your treatment!
Inspiring insights, beautifully written!

My mom suffered from chronic pain for 20 years & it was horrific & she was always angry about it. She felt like she'd been victimized, unfairly picked on by God & she was angry with God & with everyone who couldn't fix her. She could never get past this anger, and it just made everything worse. I wish she could've found anything positive or freeing in it. Instead she put on a brave face & seethed beneath the surface.

I've been reading your earlier posts & find your journey fascinating & courageous & honest. Also -- hopeful! (also: lovely haiku(s))
What an amazing person you are! Through all this pain you still see the light.... you are my inspiration.
All the very best to you and with hopes that your suffering is eased.
Beautifully written.
I'm moved by this. I'm also someone who has chronic pain, and, previous to some major events in my life, spent a lot of time in my head. I've fallen in love with the earth, and will spend hours out for walks, noticing the tiniest of wildflowers, the smell of the earth, the color of the sky, the sough of the wind in the trees. It is a gift to be so aware. Sometimes, when I'm at the grocery store, I see people, and I become suddenly cognizant that they are in pain. Some way that they carry their body, or the set of their jaw, and I feel instant empathy for them.
Your post connects for me on so many levels. I get it. I'm sorry for you pain--unlike you, I don't think it was given to me by God--but I do believe that these types of experiences bring us new experiences that count as gifts. The document that I have read over and over again, is Rilke's Letters to a Young Poet. Sending you love and hope and continued joy in this wonderful, if flawed, world of ours.
Mary Ann, wonderful. Not only is your piece touching and well-written, I think...maybe...perhaps...I hope...it just changed my miserable outlook a little. Something about not expecting not to suffer, not fearing it - that shifted something in me.
Rated! Mary Ann, this was a expertly written post because in it you communicate your spectrum of feelings so transparently. I wonder if your experiences with pain have opened your sensitivities to the pain of others and the small wonders of life. I found muhc wisdom and reassurance in your words. Every word enlightened! Both grounded in reality and growing in awareness of how small things can have a huge impact on ourselves and others. Very moving. Thank you!
It's grace like yours that makes every day in this life a gift. Keep playing with strangers. I hope the approvals come through and that you get what you need in terms of treatment; I am in awe of anybody who can live with chronic pain and still choose to wake up each day.
Thank you, again, for sharing your innermost. Tis a state of Grace you are achieving, I agree. We should all be so blessed.
A very profound and moving post. I couldn't have more respect for you.
I'm with Bruce, Mustard and Michael. Wonderful words and thoughts sent out to you.
Rated
Thanks to you all for such warm replies. I really needed them today, as it's a bad one pain-wise.

Thank you from the bottom of my heart.
Hi Mary Ann. Such a well written and sincere post. I am so sorry about your pain and so happy about your heart-felt insights. You're on a wonderful and difficult path. Thank you for sharing your journey. You are so loved by God and many others.
Verbal got it right - you are facing your situation with amazing grace! Appreciating and accomplishing the little things in life is often the most rewarding. Hugs!
Sometimes it takes a while for things to click in our heads. Sounds like you clicked. :-D

I can't imagine what it is like for you to go through each day in constant pain. I sincerely hope that you find relief. Meantime, you are doing a marvelous job and handling a difficult situation with grace.
Thank you for letting us in on some of the steps you've taken. This is a wonderful glimpse of someone shifting her perceptions.
This is one of the most awesome things I have ever read. Here you are in pain and giving to the world and reflecting on what you have learned, when so many of us (me included, me first) whine if we get a broken nail.
"I hate to think that I didn't help in these ways before, but what I'm guessing is that I just didn't see these situations, as I was too blinded by heady concepts and my own ambition."
I feel that things I have suffered have opened me up more to others, but I fear that I sometimes forget my lessons...not entirely, but they slip a bit with time. I definitely take less for granted than I used to, though. Smaller things are worth more.

"It sounds so simple, but it's quite hard for me not to define myself by my accomplishments. No wonder this pain has caused such suffering on so many levels, as it has forced me to sit still and think, to rest, to just be. For so long, I felt like my accomplishments had to be huge in order for them to matter to the world, to make a difference. I'm only beginning to see that a smile exchange with just one person can light a spark for us both that can illuminate an entire hour, or more."

This is a profound life lesson, related so well.

A friend sent me an article from the New Yorker about pain management. I can't sum it up well, but basically, the 'phantom pain' that amputees feel is something that happens to other people, as well. If someone has had a painful condition, many times the body has healed in that area--say the back--but scientists have found that within the circuitry of the mind, a path has been worn by so many pain signals, that even after the body heals, those pain signals still activate and 'fool' the patient into thinking that the pain is localized to the body, when it is the mind. They are trying to come up with ways to trick the mind into deactivating these pain pathways. I will find the article and PM you.