My Journey – Part I

Fibromyalgia is one of those dreaded “incurables”, the one’s the doctors will tell you they cannot get rid of but will happily manage your symptoms for the rest of your life with pills… to make you more comfortable.

Unfortunately, I have never met anyone who was truly made “more comfortable” with this method of treatment. Nor have I met anyone who could stop with one drug. Most drugs, in short order, will require further drugs to help with the symptoms brought on, or “made noticeable” by the first drug.

Drugs are changed out regularly for new pharmaceuticals that are always reported to be “doing wonders!” There were the Guafenison years, the Amitryptaline years… there is always something that is “so promising!” Until it manifests it’s own problems and is quickly forgotten by all except those doctors who have little experience with FM. They are promoted, then discredited, then years later become the rage again. Not because they truly do anything, but because the thought of enduring a life of pain and disability with no big promising hope on the horizon is too huge a burden to carry.

Many of us suffer a growing list of symptoms for years, questions unanswered, having no idea what is wrong with us. When we “finally receive an answer” we are happy know. This is something that we can work with… if we know what we’re dealing with.

The trouble is, the doctors *don’t know what they’re dealing with. Fibromyalgia, Chronic Fatigue, these are names given to a recognizable set of otherwise inexplicable symptoms… a label for a grab-bag of misery now afflicting an estimated 10,000,000 Americans and growing.

16 years ago, when I was first diagnosed with FM, it was not something that anyone had heard of. I struggled with it silently, unable to explain or convince anyone of it’s real existence… of the reality of the pain and exhaustion in such a young body. Now, there are promising advertisements, billboards, talk-shows, books and drugs especially created for what seems to be a growing epidemic.

But why? Where did it come from? Why is it growing and why are there no answers in the medical field?

In the summer of 2007, with a new baby girl and young son to care for, I finally reached the point where I was unable to walk unassisted, care for myself, or really bare the waking moments at all. After 16 years of trying everything my doctors suggested I feared that I might start screaming and not be able to stop.

I saw my doctor a last time. Unable to take any further prescriptions with a new nursing baby, he told me point blank, “I don’t have anything further to offer you.” Maybe you should try acupuncture.

That was it. I went home and cried. I cried for the pain, for my kids, for the utter inability to imagine a future.

I cried until there were no more tears and no more beliefs. I cried until there were no more fears and no more hopes. I cried until there was nothing but silence left inside of me.

Then I sat. Quietly. Each day my husband carried me from the bed to the large arm chair in the picture window and I watched the world with silence inside of me. That summer it rained every day. Poured, hour after hour, and the streets flooded like rivers. It rained for months and it seemed to be for me. It rained and I began to live again.

My first step was acupuncture. It was the only thing that I understood in the mysterious Eastern medicine front. I was already eating an entirely organic diet, so I believed, food could not be the cause here.

I nearly cried again when I had spoken to several acupuncturists and found that sessions were around $75 each, and though I could go as often as I could afford, if I wanted healing at a noticeable rate I needed to go at least twice a week.

HOW we could afford $150 a week in addition to the food costs was a question that I didn’t even want to grapple with, but my husband put it to me this way: If someone said to you, “give up your life as you know it and you’ll be rewarded with a new body.”

Would you?

I didn’t really know. I couldn’t really conceive of what a life with a healthy body would be like. Giving up the life I had built around it seemed terrifying. Yet, spending the rest of it, unchanged seemed an impossibility.

I realized then that if I could have a chance at a real life… a life of physical freedom, a life where I could do anything for my kids, where I woke up refreshed and able to do what I liked, a life where anything was possible to me the way it seemed to be to everyone else… I was willing to do anything. I realized that I would rather dump every cent that we had into healing and live in a box on the corner than to continue life this way.

Then I realized something else. I realized that I believed in the possibility of being healed… of being cured…. of not having to endure a life of “treating” and “managing”. Some part of me knew that I was not damaged beyond repair, some part of me knew that everything could be different. I believed that that part of me was right and I gave her full reign. Our lives became about healing. We were driven by nothing but a belief in a better life, for us all.

And so the research began. I chased down every single lead and suggestion. I believed in each of them equally and embraced them fully. I tried everything from acupuncture and herbs to faith healing, and I waited to see what happened. Each lead opened up to more until I could see a whole world of options. As I tested and tasted I began to get a better understanding that some things were simply better suited to me than others. Though chinese herbs may be the key to some, energy work may be the key for others.

The more I tried, the more I learned. The more I learned the more I began to see a larger picture, a deeper truth. As I began to hit what felt like dead ends with therapies that were working in leaps and bounds, I began to understand that there seemed to be more than one body to heal. This was something that I could work with. Shortly after I had a dream that I would be healed within the year. I saw and felt my new life and it seemed so real. Had I known in that moment the reality of that dream, I think I may have burst.

Healing Wise

This week I painted on a canvas for the first time in almost 12 years.
There was a time when I spent many hours, every day, with my art. I created and dabbled in all mediums I could get my hands on. Lived it, breathed it, skipped meals for it.

Creating was my lifeline. My connection to my unbroken self. My direct line to something deeper, more fulfilling and more meaningful than what I experienced in my other moments of life.

It carried me through the pain of the emotional abuse and neglect of my childhood and teen years. It helped me to dream of a future without those things and it removed them from me and stuck them within some immovable medium forever, where they would be outside of me, rather than carried within.

Important is not the word. Necessary, I think.
So necessary that it would come out whenever it had to, in any form immediately available. If I was in class it might come out as a poem written in the back of a book. In the studio perhaps a tangled sculpture of pieces torn from an old television set. The time and space for painting was a luxury that I almost struggled to know what to do with, so accustomed to the desperate use of any time and supply that I had.
Yes, creation… art… it was a necessary part of survival to me.

I don’t know how it slipped away. Thinking back I can’t remember a time when I realized that it was absent. I can recall a few times of claiming that I had lost my inspiration. A few more of making a joke that my talent had fallen out my ear one night while sleeping.

I think the truth though, is that I somehow lost myself, but not only did I lose myself, I completely lost any sense of myself. It was rather like falling asleep and simply not knowing that I was dreaming. Ironically, it is about this time that my lifelong bout of insomnia turned truly detrimental, often leaving me awake until well past sunrise and sleeping without dreams in a state of restless, unnamed anxiety.

I wandered around in this lost state, making cerebral and culturally correct decisions in a dreamlike reality that never seemed anything so much as far away. The years slipped by like a wormhole… distorted, too fast and too slow.

Sometimes I woke up… some part of me woke up and looked around, not understanding anything. How did I get here? Who’s stuff is this? Why do I live like this?

This is not my beautiful house…

But that other part of myself that had been making the decisions shushed me back to a fearful sleep… Of course this is your beautiful house… your life… this is what everyone wants…
children in good private schools, money, cars, playgroups and ladies’ nights out… you even have housekeepers for heaven’s sake!

But the pain grew worse. The pain in my head, my heart and in and throughout my body. The pain grew and I shrank. The dis-ease grew and I slipped farther away. No rest for the weary and no help for the sick. It’s the disease they told me… the Fibromyalgia, the depression, PTSD… we can try more painkillers… a new drug that just came out… therapies…

Who? Am? I?
Who is this person?

My house of cards was tumbling. Everything began to seem unreal… purposeless…. a sham.
The whole thing a lie.
The way we lived. The fake smiles… the whole charade.

But, at the bottom of the pit, something in me woke up inside that life… inside that body… and began to recognize it all. Then I began to recognize the same sleeping soul in those around me… unaware…
secretly miserable…
sick…
and unaware of the lie.

It was like waking up inside of a dream… Once you know you are dreaming you understand that anything is possible… that you can change anything at all.
It turns from a nightmare into a dream. A vivid, lovely, utterly real, worthwhile dream.

I am conscious now and beginning to heal the damage that was done while I was gone. I am recognizing how much of the nightmare is cultural… how much of our suffering is human suffering… suffering brought to the whole world in our own unconscious and desperate attempts to control and end that very suffering.
I also know that I am not the only one who’s waking up. I recognize others… they have a different-ness about them too. Something in their eyes… their words.
Sometimes I am recognized too. Sometimes someone wakes up, stunned, in the middle of our conversation. I see the shift, the confusion, the uncertainty, but the all important recognition of something right!

The days still disappear sometimes. Sometimes too fast… sometimes too painfully slow.
Sometimes I know that I’ve fallen asleep but allow myself to continue, claiming fatigue… fear…
Sometimes I go much too long and nearly forget myself again, but I won’t let that happen.
I am leaving reminders for myself now.

I am creating again. Leaving obvious signs of myself everywhere… paintings, decisions, friendships…
Who put this here?

I Did.

And I’m changing everything else too, so look out.

Hello world!

Welcome Home.

This is my journey of healing.

The Why.

The How.

The bumps and the triumphs.

SO MUCH MORE COMING!