Tuesday, August 17, 2010

Do You Know Why The Caged Bird Sings?

A free bird leaps on the back of the wind
and floats downstream till the current ends
and dips his wing in the orange suns rays and dares to claim the sky.

But a bird that stalks down his narrow cage
can seldom see through his bars of rage
his wings are clipped and his feet are tied so he opens his throat to sing.

The caged bird sings with a fearful trill
of things unknown but longed for still
and his tune is heard on the distant hill
for the caged bird sings of freedom.

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied so he opens his throat to sing.

The caged bird sings with a fearful trill
of things unknown but longed for still
and his tune is heard on the distant hill
for the caged bird sings of freedom.

~Maya Angelou

Oh Maya, my inspiration, my hero...you flow so poetically with the poignant truths of life. You are an inspiration, your frank honesty and raw descantments of an experience imprisoned by time and place, you have broken free of the chains that tried to keep your brilliance down and lead a life of truth, dignity and pride. Thank you for your courage, thank you for your voice.

So many of us Fibromyalgia sufferers, chronic pain sufferers, unexplained illness sufferers sit in silent misery, unable to communicate to the most brilliant doctors or closest loved ones how horribly awful it is to be locked inside a body racked with pain and sickness. We are usually blessedly cursed by not looking sick. No, we may not look as good as we once did, but most are not wheel-chair-bound, wasting away to 90-something pounds, hair falling out, skin peeling off, you get my drift. So we do not get the immediate and compassionate sympathy of others. In fact, more often than not, it is the complete opposite. "What do you mean you can't make it to Father's Day, 4th of July, Christmas Eve? Why can't you go to work today? Why is the house such a mess? Why don't you cook dinner anymore?" Oh most of us have heard it all. The guilt associated with having to protect and take care of ourselves makes it all the more devastating, as doctor after doctor tell us we are fine and healthy and just need an attitude adjustment, therapist or anti-depressant. It is a battle fought against yourself for yourself, and that is just so damn hard to take!

But let's step back from the immediacy of our own reality and recognize that "imprisonment" has been going on for thousands of years. And people have been fighting it and winning the entire time. Slavery, oppression, captivity, servitude, thralldom. We get peaks into the survivors, the Life Is Beautiful moments in time where an exceptional person will not let their circumstances get them down. It is possible. Really freakin' hard, but possible! When I was at my sickest the sheer horror of my quality of life flushing down the toilet in front of me made me work all the more, pushing myself hard to deny it, and that eventually made me even sicker. If I had taken myself seriously, if I had already been failed by modern medicines limited knowledge, if I had more self-respect or self-esteem or something, and had declared myself ill and taken charge, I believe the virus that gave me CFS would not have infected my central nervous system and left me with permanent nerve damage, ie. Fibromyalgia. But I did not. I pushed myself hard and let it fester. I felt like I was letting my husband, my family, my work, my friends, myself down. So the virus sat blooming in the control center of my body for over a year and a half and left its permanent mark. Okay, so what do I do now...

I embraced the best of everything to get better. There was no pill, surgery, treatment, protocol, test or hardly a doctor to diagnosis it. I had to go outside the confines of modern medicine to get better. If you go to the grocery store and just buy vegetables or just buy meat or just buy bread & pasta you are going to have a very poor diet and get sick, not getting the variety of ingredients infused into your body that it needs for health. Think of Fibromyalgia like that. It is an under-studied, somewhat new, non-life threatening disease that modern medicine only started paying attention to when Pfizer pushed Lyrica through FDA approval and launched a heavy ad campaign to recoup their cash. Don't get me wrong, the commercials help awareness, and I myself did benefit from Lyrica for a time (but the side-effects are just not worth it to me), so it holds its place in the process of my recovery. But there is so much more out there. I am constantly asked how I got "better" (managed).

This is how...
1) Sheer determination that I would
2) Searching endlessly for that 1st doctor that believed me
3) The Fibromyalgia & Fatigue Center- embracing modern & holistic medicine
4) Tons of nutritional supplements
5) Time off work to process & heal
6) An excessive amount of prescription drugs
7) Forgiveness of myself and others for the "harm" that was unwittingly inflicted on me during my lifetime
8) The most brilliant acupuncturist in the world
9) The best husband any woman could ever ask for, and a caring & supportive network of family & friends
10) Balancing the 5 star points of life: Diet, Exercise, Hormones, Stress & Sleep
11) Therapy, therapy and more therapy
12) Yoga
13) Moving to a warm weather climate
14) Credit cards to pay for it all :(
15) Believing in God, that I am not alone in this madness
16) Accepting that this is my journey

So as you can see there is no 1 answer. It is complicated. It took determination, strength and perseverance I did not know I possessed. When I was stripped bare and at the darkest bottom of my low I realized that control in life is but an illusion, but the 1 THING THAT CANNOT BE TAKEN FROM ME IS HOW I REACT TO IT! All I can say is life is worth living, and as long as I am living it will be under my terms, no one or anything else's. So I now have learned why the caged bird sings...because it can.

Thanks for joining,



  1. I feel as if I was reading something I wrote. It's amazing how we think alike and the whole approach on Fibro- and we have never met and live in different states. I admire your strength and it makes me feel good that there are other fibro sufferers out there that have the same POSITIVE attitude and have embraced the challenges of this syndrome and turned it into a positive by sharing their encouraging, uplifting and inspiring words filled with hope to others in blogs like these.
    What Dr. Mark Guariglia and I are trying to do through the International Fibromyalgia Awareness Campaign is to send this very message to the masses. We want to make it HUGE, take it to a whole other level- just like Pfizer did with Lyrica, but with a HUGE difference- we won't be marketing a drug but raising awareness, educating people about Fibromyalgia AND make so much noise that EVERYONE will no longer be like Fibro...what? and the government will provide funds for more research and doctors will be able to offer proper treatment to the patients, most importantly so that doctors treat their fibro patients with the dignity we deserve, so that we can have the recognition and respect from doctors. And fibro sufferers no longer have to struggle in silence, lost and confused.
    Your goal with this blogs is our goal- we want to go beyond the cyber world....with your help we can make it!
    You are a beautiful inspiration.

  2. Leah,

    That was beautifully written and I wish everyone who is suffering from Fibro and their families could see this and read this. You are such an inspiration and everything you said is so true and to the point. I give you credit for having that attitude when you have been through so much. You are truly and inspiration to us all! Take care and know that you have touched so many people through your words and made some sense out of something that makes no sense! Take care of yourself and be proud of who you are and what you stand for!