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
APRIL 13, 2009 11:40AM

A Toll On My Soul

Rate: 10 Flag
I was procrastinating on Saturday, as usual, so when I went to pick up my pain medication at the pharmacy across the street, I found that they'd closed a little early, and I was absolutely freaked that I wouldn't have enough meds for the following day, yesterday (Sunday).

For someone in chronic pain, narcotic meds are a type of deal with the devil, for on the one hand, they provide a certain amount of relief and respite--a sense of control over miserable circumstances--but on the other, they rob you of your normal emotions, even if, like me, you don't necessarily feel high anymore (not unless you take too much, which I've been wont to do now and then).

When I saw I had just one 10 mg Oxycontin pill yesterday morning, I knew it wouldn't be enough for the day and this made me nervous, but what was actually disturbing was the realization of how much a part of me these pills have become.

While they do ease the pain somewhat, they also take a toll on my soul, and it's hard to imagine life without them now. In a strange way, they fill the space that is the loneliness one feels with chronic pain. When I take my pills, the world is a little brighter, a little softer, and I'm happy to passively sit back and let it pass me by. But it's never without some regret, for when I watch TV, it's like I'm watching others live life for me, and I'm envious of their healthy, vibrant lives.

If it's a true crime show, I wonder what it's like to passionately catch crooks all day; if it's a TV drama, I wonder what it's like to live the life of a successful, creative actor; if it's a reality show...well, OK, I rarely envy those folks, especially any of those Real Housewives babes. If I lived in a world where I ever had to go to a "big hat luncheon," I'd slit my wrists. But I do envy their healthy, pain-free life.

In the past few months, I've even become something of a recluse, which is just plain weird for me, considering my personality. But the pills actually make watching lots of TV interesting, which is what I learned yesterday, as without the pills I was absolutely bored to tears by just about everything. I almost didn't know what to do with all the time, not because of the pain so much, but because I no longer recognized myself. Spitfire Mary Ann has turned into a human lump on the couch. I didn't even feel like shaving my head, which is saying something, because I always get a big kick out of that.

I can tell I'm withering, as I now shave my noggin every two weeks or so, as opposed to every five days. I used to love the fiery feelings my hairless dome would bring up--such adventure, such mischief--but it's as though there's few feelings at all anymore, except exhaustion from all this endurance.

I have to remind myself that I haven't given up--that the therapies I've set in motion take time to come to fruition. Hopefully, I'll get accepted into NYU's psychoanalytic program, so that I can probe the mind/body connection in all this, and once that happens, I'll have more surgery. I want to do things differently this time. I want to be more aware of what's happening in my subconscious before I go under the knife again, which is a curious goal considering I really have no feelings to report, other than an opinion on that cool Chariots of the Gods show on the History Channel yesterday, which wasn't boring at all.

I have to admit; watching all those talking heads speaking so enthusiastically about the possibility of ancient aliens made me wonder what it's like to be an anthropologist. Who would I be without all the pain, all the pills?

It's a beautiful, sunny day today, but it may as well be raining, 'cause I doubt I'll be going out. I know I should push myself, but I'm no longer chasing my dreams and passions anymore. I'm instead running from the monster as fast as I can, only to find he's keeping up quite well and resting comfortably, in fact, in my own body. The only ammo I've got is this friggin' pill, which tames him temporarily, but tames me, too. I'm just so sick of all this crap, all this pain, all this confusion, all these pills.

Now where's the remote?

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Comments

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Well, I guess you know how to cut up the pill and dole it out in portions if needed? Meds are such a complicated thing. I see how much good they can do and the havoc they can create. Robbing you of your soul...its true. Somehow meds always seem to steal some soul.

As for the idea of "pushing yourself", don't guilt yourself too much. I'm of the school of thought that you should embrace your crappiness and that "pushing yourself" can cause even more distress and guilt.

Anyway, more importantly, your piece was told simply and effectively and I look forward to hearing more.
Hey Mary Ann. It's me, Dave. Really good post. Reflective, honest, and insightful. Thank you for continuing to share your journey with those who care.

Dave
Fantastic! This is great writing. I hope that you get some relief too.
Beth--I love the idea of "embracing my crappiness." I'll have to think about that. :) And Dave and Kathy, once again thank you for your words of comfort and encouragement.
Mary Ann, a woman after my own heart. As you know, we have a lot in common as far as pain goes. You're right, The fist thing I do after I have my coffee, perc, and a time release pill, and sit up until it kicks in, is make sure I count what I have left. Like a fucking junkie. I hate it. You can't be caught running out, or it's hell to pay. Phoning around to your friends for a pain pill is the most de-grading thing in the world. God- forbide, running out on a Sunday. What a miserable fucking existence. But, what can I say but keep up your spirits, they're working miracles now!
Scanner--I get such a kick out of your writing. You don't mince words! Yes, one DOES feel like a junkie when counting pain meds, but in my case, I AM a junkie at this point. :) As if I don't have enough problems. That's okay...I'm going to find my way out of this mess if it kills me, which, of course, might actually happen. ACK!
I did a 17 year sentence with opiates-- 100mg daily. So many surgeries, so much pain. Illness required my parole. I feel for people whose lives are no longer their own. Chronic Pain is hell on earth. Deal daily with what you can, never look beyond the moment. --rated--
Mr. Mustard--Yes, a sentence is exactly what chronic pain feels like. You're a prisoner in your own body, and you can never get away from it; you can never pull back and say, "I don't think I'll deal with this today." Great insight and thanks for replying.
Again, I think people who are not in pain, have no idea what we'er talking about.When you can't see it, hear it, feel it or touch it, most people think you don't have it. In the army they called this "Goldbricking". What a fucking name.
I am sorry for your suffering. Obviously, you have a fiery spirit, so if you could do more, you would do more. No shame in needing a rest. I have felt, too, that drugs are a double-edged sword. They help *and* rob, but one day you can look back on this as something you've overcome.
I have done exactly the same thing, more often than I admit. It is just easier to take the pills that dull the neuropathy in my feet, the gabapentin and amitriptyline, but also tend to dull me down, so that I can spend hours on the laptop with the TV on just over the computer screen as it is now. And then they make it hard to go to sleep but almost impossible to get up in the morning. And every morning it is like I could just sleep my life away. NO! I must fight it.

Thanks for this open and honest post, Mary Ann.

Monte