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.

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FEBRUARY 12, 2011 12:42PM

The Weight of Encroaching Ice

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I had a strange dream last night in which glaciers were beginning to form all around New York and I could see the ice getting higher and higher, climbing ever closer to my apartment window, which meant that I'd soon be encased in ice. I knew that my car was parked on higher ground, but I couldn't find it anywhere, which meant that I couldn't flee the city and that I'd soon lose everything.

I suppose that's what my life feels like, that my world is getting smaller and smaller, and ever the more dangerous, as this pain drags on, offering little hope that I can ever flee to a better place. That's the thing with pain. You can't decide to just take a break from it. In fact, you basically lose all control over your own circumstances, and your decisions are no longer yours, just like any catastrophe, like a new ice age, where everything you've ever done will be devoured and destroyed, and all you're left with is yourself in your own skin, wondering how you'll ever navigate is this unsettling new world, where all rules of society and civility will have to be rewritten.

In the dream, I remember looking at my paintings on my walls, wondering if I could take them with me, as I knew if I'd left them, they'd be destroyed by the water and ice. I realized that there were just too many and so they'd have to be left behind, and it made me sad to think that so little would be left of me, so few remnants to remind anyone that I was ever here.

That's what my life feels like right now, as I find that I'm just sleeping the days away. My mom suggested that I maybe go back on antidepressants, but they never really lifted the sadness over the shrinking contours of my life. After awhile, they were just another drug in my system, and the point lately is to get the chemicals out, to get back to something I've been reaching for ever since this all began--back to a lightness of being, back to a happier state, back to hope.

As I sit here writing, my body feels like a ten-ton weight, and I'm not even sure what I want to say, other than these periods of extreme heaviness seem to crush all motivation to do anything useful or fun. At times, they can lift somewhat, and I can make my way to the gym, or spend time with family and friends, but today, everything is just getting smaller and smaller, as the ice and water get ever closer to encasing me for good. It's days like this that the will to go on wavers, as when I look ahead, I just don't see any solutions.

I am going to a new doctor, who has me on a nutrition regimen that is supposed to reduce acidity in the body (as acidity is supposedly a huge coponent of chronic pain), and I've spoken with my previous oral surgeon about possibly trying surgery again. But I'm so at the end of my rope. I'm not sure I could withstand any more disappointments. But I'm not sure how much longer of this I can stand either.

My friend Lynda theorized yesterday during her visit that these new supplements are perhaps detoxing my body, which may account for the sluggishness, and surely there's a lot to detox. These daily doses of morphine can't be good for my health, and I sometimes think of just going to a drug detox center to see what will happen, to see if I can stand the pain without all the drugs. But that requires making a plan, something I can't stand to think about at the moment.

I suppose what makes me the most sad is that my life has come to feel like such a waste. It's a waste in terms of any good that I could be contributing to the world, and a waste for me personally, as it's become nothing more, it seems, than a study in endurance.

Sometimes I've thought of turning these writings into a book of essays about a life in chronic pain, but along the way, I've always hoped that I'd have something inspirational to offer--that I'd land on some softer sand, which could maybe be a map for others as to how they could better cope with the unthinkable.

But here I am, over two years later, with little more to offer than when I started. It seems that for some, cruel twists of fate stay cruel, and I've no explanation for it, no words of wisdom, no path leading the way out. It's a mean existence for sure, and the day may come when I just won't want to do it anymore. I hope those who love me will be able to forgive me.


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You just do what you have to do. I have lived with pain and then days without.
Nothing but good thoughts and hugs
I'm in pain right now. But doing writing and feeling good about it. I would love to be at a great fair or festival, able to buy and share great things, or surrounded by a great family, but that is not happening.

Do not let your mind take your heart from you and be strong. Every day is another day and if one minute of it was brilliant, then that may be enough.
I believe that you are still a perfect soul, and it is not affected by this. Someday you will be free, and not bound by a painful body. A brief book on chronic pain might help some in the same situation.
I love you.
this is brilliantly written, by the way!
Hey Mary Ann,

I've been thinking about starting a blog, came to the site today to check out yours.

Geez, I am so so so sorry for all that you are going through and dealing with.

I have been living with very horrible...and often life-threatening health problems since 1983 or so.

During that time I have had headaches that lasted 3 full months - that is 24 hours a day, every day, for 3 full months. I have had back pain that lasted for 2 years straight, every single day, 24 hours per day, for 2 years straight. And really, that is just the beginning.

So, while I can never know exactly what you suffer, I certainly do know extremes of suffering.

You really never know what hope exists in the future and what the future can bring. We just never know. Even if it completely defies logic to hope, we still have to hope.

With my back injuries, it took me about two years to figure out how to get out of pain. It involved 4 - 8 hours of work, every single day. I did research, I did stretches from Hatha Yoga, magnetic therapy, positioning work, changed my mattress, acupuncture, Feldenkrais, Alexander Technique and more.

It was only after that kind of sustained effort for that length of time that I figured out how to bring myself out of pain.

Like I said, you never know. There always is some hope.

I have been suicidal myself, and many times. Most of my friends with severe chronic pain have been. There was one point that I had to remove all knives and pills from my house, just to be safe.

In the late 80's, my uncle committed suicide. I wish I could tell you it was some kind of beautiful release from pain, but it wasn't. It was probably the single most horrific event in the lives of about 20 of his close relatives. Hard to describe, but the word "haunting" comes to me. You just play out scenarios, endlessly, of what you could have done differently. A week before he killed himself, I was on the phone with him. I was encouraging him to do some volunteer work (he had retired, and, apparently, the depression was getting worse). I failed. I failed to get him to go do the volunteer work.

I don't mean to be harsh Mary Ann, but if you kill yourself, your death will haunt and torment all your friends and loved ones, for the rest of their lives. That is just the way it is. You simply have a duty not to surrender to it.

I hate it myself. I don't really want to be around. I am in too much pain. But I do recognize, that I have a duty to carry on.

Plus, you never know...you might be able to find some kind of acupuncture points or some kind of meditation that will significantly reduce the pain.

Or some kind of breathing technique, whatever. I used some of those. Some exercises from martial arts. Makes you kind of "gung ho" and able to drive through just about anything. Has some down sides, but, like I said, there is always another opportunity, another technique out there to try.

You are an incredibly talented artist and a very nice person. You still have a lot to give to the world. Even if you can't produce art or music at the rate that you used to, there are still ways to be creative and produce.

Please try and hang in there.

I, for one, will be one of the folks completely crushed if you end your life..

(and now, the tears start welling up....please, please, please don't surrender to that demon).

Much love,

Jon