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 a revelator, your frank honesty and raw descant of an experience imprisoned in time and place. You have broken free from the chains that bound, tried to keep your brilliance down. You 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. We are 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? Where are my clean socks? Why are you always sick?" 

Oh many of us have heard it all. The guilt associated with letting down those we love, having to protect and take care of ourselves while fighting for our right to be sick. It makes it all the more devastating, as doctor after doctor can tell us we are fine and healthy and just need an attitude adjustment, therapist or anti-depressant. Or my personal favorite, more exercise. 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. Since the beginnings of humanity. 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 fight against it all the more, pushing myself hard to deny it and fulfill the responsibilities of healthy me. Well ultimately that made me even sicker. If I had taken myself seriously in the beginning, had more self-respect or self-esteem or something, maybe. If I had already been failed by modern medicine's limited knowledge and knew every ailment did not come with a procedure or pill to cure it, maybe. If I declared myself ill and had taken charge I believe the virus that gave me CFS/ME would not have been given the opportunity to rattle around and engulf my central nervous system, leaving me with permanent nerve damage. But I did not. I pushed myself hard and let it fester. I felt like I was letting everyone down, including me. So I ignored it, while completely succumbing to it, in ridiculous denial. The virus sat blooming in the control center of my body and left its permanent mark. It took me down, a hard crash and burn, after it took everything else away from me. There is nothing I can do about the past, but what do I do now?

I embraced the best of everything to get Fibromyalgia under control. 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 so it holds its place in the process of my recovery. But there is so much more out there. So much more! I am constantly asked how I got "better" from Fibro. I can't answer that because I didn't get better, I got it managed. It took an exceptional amount of work, perseverance and an unwillingness to accept defeat. I did not know I possessed that much strength, but somehow it was there. When I was stripped bare and at the darkest bottom of my lowest low I realized control in life is but an illusion and the one thing that can never be taken from me is how I react. So here I stand now, waving my arms on the other side of hell and back, beckoning all to join me. Life is precious and short and overwhelmingly worth living. But as long as I am living it will be under my terms, no one or anything else's. This awful, terrible and ultimately freeing experience taught me why the caged bird sings. Because it can.

Thanks for joining,

Leah

This blog was originally published on 8/17/10. It reminds me of the long hard road behind me and that I can again conquer the long hard road in front of me.