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
MARCH 31, 2009 12:53PM

Hotel Heaven

Rate: 30 Flag
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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Wow! I can't believe I stumbled upon the treasure of your writing. So transparent...so honest...I firmly believe that there is something sacred about raw honesty like yours...I think "bliss", "miracles" and "transformation" can only come about when we are honest with ourselves and others-- and you've got something here.

I have no idea what this must be like but I'm tuned in and hope to hear more about how things work out for you along the way.

Peace be with you
I'm praying for you. Don't worry, I won't stop; I won't let go.

I admire you enormously for writing while in the bowels of the darkness.
Hello.. I also suffer from chronic pain and so I know, (all to well) where you are coming from. I was pointed to your blog tonight and am glad for it. At the moment, I am going through a vicious cycle of insomnia because of my own version of the pain story, due to lack of money to pay for my meds which makes my pain... pain on top of.

Gahh!

I'm sending all of my best thoughts of Karma your way, for what it is worth.. And have made you a favorite, so I can find you again. Thanks for your post.
My dear Mary. I had your blog sent to me by a fellow OSer. I too suffer from chronic pain. I have both lupus and fibromyalgia. I do know chronic pain, a bedfellow I feel has invaded my body to such an extent I often wonder if I will ever have a life without.
I have no healthcare and take no meds.
I have added you as a fave and will read anything you write.
And the quality of your writing is very good here....
Wow!

Excellent and powerful.

I will put you in my prayers.

Rated
There are many here with similar issues. I feel for you. Give it time and never give up the fight. Healing thoughts sent your way.
mary ann, i dont know what to say in the face of such pain. i am so sorry, and i will send prayers up for you, and i will send pain-free vibes to you, as i do to others on here. thank you for sharing with us.
Thank you for your post. I don't feel so alone right now after reading this. I'm searching for answers too. Your honest touched something inside me, kind of relit my will to live. I will say a pray to the universe for you.
You write so well, and you are going through such hard things to endure... feel accompanied by many, sweet lady. I´ll add you to my list of favourites. Thanks for your writing.
I've had my own journey with issues that deteriorate the human spirit. I don't claim to know chronic pain as you write of, but I'm reading and learning. I do hope to read more from you! --rated--
best wishes for a solution to your suffering. thanks for sharing this.
Your courage amazes me.
Have you tried pot alone, without the RX's? Have heard it can work wonders with pain.
Sweetie, my heart goes out to you, more than I can say.
A stranger, yet a common dilema to so many of us in varying degrees; different stages of our lives.
Do, do pray, Mary Ann. Never stop asking for what you need so desperately. Every night and every morning, your day's ending and the new day's beginning, say that one prayer for your heart and soul to be filled with healing, light. Less pain, please.
Continue to seek new medical arena's to cope, learn and find solutions, both western and eastern.
Certainly you already know and do these things.
My prayers are with you this day and you will be in my heart.
I'm another chronic pain person and I've learned to live with a certain level of it. One sage counsel told me about "rebound effects" that some painkillers put us through. The pain comes back worse when we stop the painkiller.

It's been a struggle, and it's one today, dealing with life and with problems and with pain, but with faith and ways to keep doing something good, the pain tends to fade.

Today, I'll get any kind of exercise. Walking, swimming in the heated pool, something. Endorphins are mighty, mighty painkillers. Even chair exercise helps.

My prayers for you as you tap into that "something mighty"!
Hi, Mary, thank you for the post. It helps me understand better what my went through for the last ten years of her life. I was especially interested in what you said about hope and the loss of hope.

My mother was in chronic pain because of a fall she had taken and because of the two cancers she fought against, and for those last ten years she struggled to find something that would help her with the pain. She took medicine, saw doctors, took all kinds of therapies her friends recommended. Nothing worked.

My mother was pretty hopeless at the end of her life. And she knew it. She had had 2 serious cancer surgeries, had a breast removed and most of her womb, and she couldn't walk and hadn't for 2 years been able to stand for more than a couple of minutes. Bad heart, bad lungs, bad circulation. In pain all the time.

My mother used to say, "I have no hope." And she meant it. There was just the waiting to die.

I asked my mother near the end if she wanted to die. She had had a bad stroke and was dying, and I knew I could get the nurse to give her more drugs and that the drugs would finally kill her in a couple of days instead of the 3 or 4 weeks it would take-- and my mother said no.

I'm not sure why she said no. Did she believe God would punish her? Maybe she was used to the pain? I don't know.

It was pretty much the last conversation my mother and I had. She disappeared into herself just after that. She couldn't talk or hear or signal by blinking her eyes or squeezing my finger. She was about all used up--but she still didn't want to die.

And it wasn't like her life was so much. She was 84, paralyzed, in pain, and would never even sit up again.

So what kept her going?

The inability to think it through? Something in the DNA?

People are a mystery.
Talk with my friend on this site Wheeler 75, He is going through similar things. Your writing talent is very evident. Keep reaching out, many of us will be there.
Mary, I found your blog here thanks to a marvelous friend. I decided I would begin at the end and work my way back. :-D

I wish that I could offer you some comforting words, some wisdom that would make you feel that keeping up the fight is the right and best thing to do. I can only say that I believe with all my heart and soul that suicide is a permanent solution to what is usually a temporary problem. You write exquisitely and honestly. It is your gift. I sincerely hope that you continue to share your gift with us for many years to come. There is strength in numbers, and there are countless writers here at OS that not only get what you're going through but are also traveling that road right now. Good thoughts and prayers being sent your way.

Rated.
Sending prayers and good karma your way!
Mary, I went back and read some of your old posts. Your story is so valuable to me and others who struggle with all sorts of mental and physical pain. I know you're tried a lot of things, but I've just run across something that seems to be working for chronic pain suffers, addictiions, depression, and ADHD. It is called neurofeedback. There is an article on it in Ode Magazine here:
http://www.odemagazine.com/doc/61/neurofeedback/
I googled it, and there are both you-tube examples of neurofeedback systems which look really fun, and sites that connect you with practitioners. There are also home units which are a video game that you control with your mind only. It's totally wild. I want one. Please check this out. It has been used in Europe (was invented there). It is related to meditation. Best to you! My prayers are with you.
I think you have found a good place here. My husband has MS and I know better than to give advice or sympathy. But I will be praying for you, and I hope you will keep writing. I know you have touched people today: I received two messages in my inbox from friends asking me to read your post.
I have no words right now, but I'll be thinking of you. Please keep writing.
Ric put me on to your blog and I am glad he did.

I too suffer from chronic pain and so do many others here on OS. You are not alone and you are not the only one who has to deal with this problem every day of our lives. We will be here for you and pray for you and try to help you get through the worst days.

I do not know much about your pain but I will read back into your prior posts to get an idea.

Incidentally, I am sitting here writing this because I am going through my every day three to four hours with my feet up and a fan on them to rid themselves of the swelling and redness and excruciating pain that makes it impossible to walk until I get them to a place where I can walk.

That place is not pretty and walking is damned hard, but after a few hours every day I can stumble around. So, would I rather be doing something else? Hell yes, but I do what I have to do. One day at a time. You can do that too.

Keep writing. Don't give up. We care. We really do.

You are in my prayers.

Monte
"One day I feel,
I'm on top of the world,
and the next it's falling in on me,
I can get back on, I can get back on.
And one day I feel,
I'm ahead of the wheel,
and the next it's rolling over me.
I can get back on, I can get back on."
~Neil Peart

You can get back on top of the world, dear. I know it is hard (I suffer from chronic pain myself), but whatever you do, be sure to embody the moment. Especially if you are feeling better. Just try not to think about the pain you might or might not wake up with the next day, try to enjoy whatever you're doing. And on the painful days, just focus on avoiding as much pain as possible, however you need to.
You have my best wishes :)
Mary Ann, you're in my thoughts and prayers. Try to believe that this, too, will pass and you will have other days like the 28th. Rated with {hugs}
For God's sake! Why only a few hits off a joint??!!!

Mind & body sacrament to me...i mean that deadly serious...

Jim again...see comment on last post, first...

not a pothead...tho: it's curious how this drug has been stigmatized: they can't get any good medical stuff against it, nothing that impresses me....so they humiliate the users....shamed a whole generation of us...the "X-ers" with that Nancy reagan preview
of the present Big Mother State.....
You are a great writer. You conveyed an idea that I have struggled with an failed to convey--the idea of some kind of serendipity or synchronicity to things. I felt this several years ago and have only felt a little of it since. It is hard when it leaves, but I do think that it can suddenly come again. definite prayers your way
Came over here by suggestion of Ric Tresa (aka Ric Treasure). I am so sorry for this affliction, and would like to know more if you're willing. When did come on, and why? Is it isolated to your jaw? Have you had a diagnosis? Chronic pain is absolute hell. I have periodic sciatica and when it strikes, there's no comfortable position, and no relief. I would take Vicodin by the handful which would offer only the most minimal and temporary relief. It is gone for now; I can only imagine what you are going through unable to relieve your pain.

Please hang in there - there are so many new therapies to deal with this now that Doctors have begun to realize how debilitating it is, and how real it is, even if there's nothing on an X-ray or in a blood test. Your writing is marvelous and honest and I hope it helps a little to get it out. We are all pulling for you!!!
uum, goood morning if yre still alive...actually, now i think of it, even if yre dead yl still haunt yr old site somewhere in Therein

Eternity somewhere. lots of wheres & whens i'm sure,,,
anyway, back to hear & now,
ha, here not hear,
tho both apply...
i am happy you're still in yr material aspect, if you are..