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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OCTOBER 25, 2010 4:12PM

Another Day in My Pajamas

Rate: 15 Flag

Make no mistake—no matter how much one thinks he or she has accepted being in a state of chronic pain, the bad days cause reflection on those that were better, before the unacceptable occurred and we were unalterably changed forever. 

And it’s on those days that I realize that at my core, I’m still just so profoundly sad about it all. While being in pain has unquestionably deepened my compassion for all living things and has perhaps made me more human in many ways, I’m still just so fucking angry that this is how my life has turned out, and it doesn’t look like anything is going to change—certainly not in the short run.

Maybe I’m blue because I’ve undergone yet another change in my pain medication regimen, and I sometimes feel like I’m sleeping around the clock. Even though I’ve attempted in the last month or so to take steps back out into the world—like joining a gym, joining an internet dating site, painting up a storm in preparation for an exhibit and going back into therapy—the bulk of recent weeks has been spent in front of the TV set, where I get to watch other people have lives, which in turns reminds me of who I used to be before this trial set in.

I suppose my gentle forays out into the world haven’t been going so well, which is just adding to my frustration. At the gym, it can feel like a herculean effort to do just 30 minutes walking on the treadmill, I rarely check the dating site as I just can’t imagine myself being the flirty girl anymore, and my painting has hit a creative wall. And as for therapy, this new therapist has an extremely spiritual bent—something I’ve never experienced before with previous professionals.

On the one hand, I could say that she’s a perfect pairing for me, as the reason for my crippling depression when the pain struck in ’04 was complete spiritual devastation and the total unraveling of my faith. But such a statement would imply that somewhere deep within I believe some type of magic is at work—that this person has come into my life for a reason and that there are no accidents.

That’s certainly what Glori (my therapist) believes, and at times I find myself getting angry at her for such crazy statements. The old arguments erupt—like why would any loving creator allow such suffering in the world?—but I suppose I’m tired of hearing those tapes run in my head, which is a lucky break for Glori, as I’m more open now to hearing what she has to say than I would have been, say, three years ago.

Oddly enough, my reasons for entering therapy again have had nothing to do with spirituality, but rather have been an attempt to get to the core of my intimacy issues with men. It’s a complete coincidence that Glori has this spiritual slant to her work, which seems to have superseded my original intentions for returning, at least for the time being.

She’s an extraordinary woman who speaks five languages fluently, has studied the kabala for over 30 years, and is well read on nearly every religion that exists, so when she speaks, her words carry a certain love and authority that can be soothing, even if I don’t necessarily believe them.

Glori believes that in order to deepen our humanity, we must go through these trials, and the further down they go, the further we will ultimately rise. This is life’s cycle, she says, and if it didn’t happen, we would become stagnant. In a sense, I can tell she believes that my pain is a type of gift, in that I now can connect with all suffering in the world and thus be a force for good, should I accept the assignment.

It’s certainly a nice thought, but hard to comprehend during the days I feel so utterly useless. Today, for example, is yet another day I’ve yet to get out of my pajamas. This new medication is so strong that I woke up with a borderline migraine headache and nausea. I’ve been taking considerably less today, which means the pain is greater, all while I watch a Law & Order: Criminal Intent marathon.

The only way I can think of to make use of today’s particular trial is to write about it here, in the hopes that someone else who is suffering will read it and not feel so terribly alone.

I see Glori again on Tuesday. As I write about her, I’m reminded of the positive affirmations she gives me to say, none of which I’ve done.

I do have a favorite though, which comes from the Hawaiian HoOponopono religion, and it’s one we’re supposed to say to our creator as a way to take responsibility for our lives. It goes like this:

“I love you. I’m sorry. Please forgive me. Thank you.”

When I feel lazy, useless, jealous, or whatever, it does have a certain power to it that soothes me. Maybe I’ll pull out her affirmations tonight and give them a spin, although my exhaustion level makes even the utterance of words feel like lifting weights.

I’ve got to try, even though I’m so fucking sick of trying. Maybe what I need is just a good cry, even though I just had one last night. The purging of tears, especially with a good friend, seems to be the only thing that truly gives me solace, peace and contentment.

 If only it could last. 

solace
  

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First off, Mary Ann, it's good to see you on here again. Must admit, I was somewhat concerned.

Second, I think I know what Glori is getting at. I've long argued that good cannot exist without evil, else how would we know what good is? That isn't meant to condone evil acts or evil itself, just the recognition that it has to exist -- a yin and yang kind of thing.
Redux: Thanks for your kind reflections. I understand her too, which is why I'm going to stick around and see how our therapy develops. She sure is different! She's fully accredited and I'm seeing her at a clinic, so she's not one of those New Agers who's hung a shingle and is dictating her beliefs. She's simply coming from such a different point of view than most therapists.

Thanks so much for replying. It's good to hear from you.
Ahh, Mary Ann, how I wish I had some mystical, magical words of wisdom that would help you through this dark time. Alas, I do not. All I can do is tell you I have some idea of how you're feeling, as I battle pain constantly myself (and have no answers for myself, either). All I can do is wish you some element of success with your therapist, some scant relief, some good friends willing to cry with you and hold you tightly. I'm here if you need to vent in writing. I promise I'll read. D
Yarn--Well, that choked me up. Seriously. Thank you.
Mary Ann, your suffering enlightens us and make us more empathic. Please stay and vent. I will read. I will learn. I wish you healing.
You are beautiful writer, an artist who still has much to give to the world. Wishing you some peace and relief tonight across the miles.
Have a good cry, it can't hurt and might do some good. I am not putting Gloria down by no means, but if she's saying the pain I go through everyday of my life is making me stronger, I disagree strongly. It's killing me one day at a time. I get weaker, can not walk as far and like you, stay in and do nothing but stay on this computer. I used to have a life before the pain. I used to laugh all the time before the pain. I used to enjoy waking up before the pain. Now I have to take a pain pill and wait thirty minutes before getting out of bed. When is this metamorphosis supposed to happen. I hope it's soon, I really don't know how long I can stand this. I am not religious, maybe thats my problem. Sorry for the long comment, sometimes it's just hard to discuss pain with people who aren't in it. I know you are. I really, really hope this works out for you!
“I love you. I’m sorry. Please forgive me. Thank you.”
Pure Wisdom...
and I'm still rooting for you.
I don't have many words but I too am glad you are here I worry when I don't see you around. I think Glori is really on the right path I hope it helps you find some peace.
I'm sorry to hear that you're still in pain. You're a brave and inspiring person.
Hugs and hugs! You are such a fighter and you deserve a break.
I learned a few things reading this today. Your writing is very clear and conveys so much controlled emotion. I can't imagine what your life in chronic pain is like. But I got a glimpse of your suffering. I am sorry. Please keep writing..
Mary Ann, grand to read you again. When I first came here it amazed me how many others suffer chronic pain. (I suffer osteonecrosis of the spine and thus have had portions removed) I understand your feelings of being lazy, useless and such. And the pain meds...Oy Vey! You have great strength in taking the steps you have; therapy and even going to the gym. I have great faith and respect for your recovery efforts.
Rated.
Oh yeah-Go Jersey!
From an old South Jersey boy transplanted to Oahu
All of your comments are giving me the tears I need today. Sometimes they get so blocked up, but when I write on OS and get this kind of compassion, I break down, and that's a good thing. I'm always amazed at the generosity of the OS spirit.

Scanner, it just sucks that we have pain as something in common. I can relate to just about everything you say.

And Scylla, have you heard about this Hawaiian religion my therapist speaks of? I'm going to google it today. (Wow--from Jersey to Oahu--now that's a leap!)
Hi Mary Ann. I always look forward to the brutal honesty of your posts, perhaps because they resonate so deeply. While I am not contending with your chronic physical issues, I still relate completely, which I hope isn't an insult to your experience.

Normally that type of spiritual advice (from your therapist) would unnerve me, but somehow, for some reason, it sounded comforting and warm nonetheless. Like someone telling me a tale that I didn't believe but I liked the sound of their voice.

If you're going to go for a Law and Order marathon, try not to make it Criminal Intent. Vincent D'Ononofrio has a strange effect on me over time. Go for some old school early years Law and Order.

Peace to you. I want to see more videos of you singing.