The Night Before

I searched for the book 'Proof of Heaven' in the Kindle Store because I need it now more than ever before.

My world is upside down. The reality is setting in. Tomorrow morning we will be at the neurologist's office as my symptom now suggest ALS (Lou Gherig's Disease). I cannot begin the CRPS treatment program until we rule ALS out. To do this we need one or two more tests.
The symptoms I have are text book ALS.
As defined by Mayo Clinic it states:
~Difficulty lifting the front part of your foot and toes (footdrop)
Weakness in your leg, feet or ankles
Hand weakness or clumsiness
Slurring of speech or trouble swallowing
Muscle cramps and twitching in your arms, shoulders and tongue
The disease frequently begins in your hands, feet or limbs, and then spreads to other parts of your body. As the disease advances, your muscles become progressively weaker until they're paralyzed. It eventually affects chewing, swallowing, speaking and breathing.~

There is no specific test for ALS. It is diagnosed by the very long and arduous process of ruling other diseases out by endless X-rays, brain scan, MRI's, CT scans, blood work, possible spinal tap and muscle biopsy, Electromyograms and nerve conduction studies. Which is why it has taken a year to rule what my symptoms could mean. We have arrived at CRPS, but now it is ALS we must rule out before we can proceed.

Tonight I fell into my husband's chest and wept so deeply I fell into his heart.

I am not angry at God. I am saddened that it takes the proposition of death, to realize how fragile life can be.

Every prayer that is sent our way is protecting us tonight. I can feel a force around us, catching our tears as they fall. And reassuring me that God has us in His arms tonight as we wait to see If 'Proof of Heaven' is just a book, or if it is a place I will soon see. But no matter what the answer is, I will manage to move forward because this year has taught me to believe.

"Get Raw" Wristbands to Raise Funds for Bensko's Health Challenge

Receive a GET RAW wristband with every donation of $10 or more. This blog is about being raw. That's what happens I guess when you end up writing about the only things that matter in life: family, health, love, and keeping it real. Writing has been my oxygen during this difficult time, resulting in a memoir titled The Beauty of Being Raw. These wristbands are a way to show support for my dream of publishing this book. Thank you with all of my heart.

Table For Two

We sat at a table for two. The cucumber salad slid and crunched. Slid and crunched. Eating is interesting when you try not to choke on your thoughts. On what Monday could bring.

A lot goes through one's mind when facing a possible diagnosis - again. This time it might be ALS or a similar Motor Neuron Disease. It's like a view from a roller coaster. A repeated blur of imagery that turns your stomach on its side. Especially when it's black and white.

I am hoping Monday isn't black. That light flickers in and the doctor shakes his head in a way I'd prefer.

Right now I cannot sleep because my heart is riding a wind it cannot deflect. Life is surreal. As though angels have built a forcefield around my heart; Protecting me until we know what the neurologist has to say.

I said the words out loud. The what-ifs a husband should never hear. When his eyes swell with a future of emptied thoughts. Of one pillow on his bed.

I accidentally suck my soda through the paper wrapping left on top of the straw. An attempt at sterilizing our meal. A straining of carbonated words I cannot say. The table tips with un-leveled heels. The perfect setting for such a meal. We smile through the moment. Grateful for a pause in what we know. That Monday means too much.

We pay the check. He wheels me out. I look up. He looks down. His lips are mine. I love their shape. His chin. His jaw. I fall up into his eyes. He says he cannot lose me. My chest pulls to his heart. I answer that I do not want to be lost. Our hands fold into one another on the way to the car. We can live with this - the chair. But not an empty one. Not that.

We are in the eye of a storm we thought had passed. But no matter what the doctor may say, we will one day look back in awe - at when our life was left in balance at an un-leveled table for two.

The Shade

I have had so many good days since my surgeries took much of my pain away. Today there is a change where fear has crept in. To say anything else would be disingenuous.

Blogging is therapy. But it is so because only if it is honest. You have been there through my strongest and times. Today my roots are bending. My limbs bouncing in a rain.

My diagnosis is almost certain. But there is a window cracked just enough for a guest to open with its glove. Lately, symptoms with initials have left stains on my cheeks. My face buried in Don's chest. Because of what they might mean.

Disease can bring fellows to bed. Leaving you wondering if it is alone.

MS has pretty much been ruled out. ALS has not been completely dismissed (also known as Lou Gherig's Disease). I have an appointment with a neurologist on Monday. Yesterday, my physical therapist came to work on my limbs and I put on quite a show for my dogs. Every effort crunched my face into a distorted mess. But I made it through the exercises with the help of his hands around my legs. But I noticed something had changed. My right leg that I thought had paused its decline, did not. And my good arm's hand felt weaker than before. My resting fingers curled into my palm instead of resting with air beneath their tips.

CRPS sometimes operates with illness of another kind. Others also brought on by trauma like mine. A hit on the head can echo for years to come. A sound deafening to the spirit on days like this. When you must listen for the whisper of an angel's voice telling you you're wrong. That all is as you knew. And the treatment course is enough.

But what if it is not? What if a passenger rides within, unannounced and silently lurking until its time has come to be revealed?

Others would not like for me to say these words, because it may be seen as thinking of the worst. But no matter what it is - if this is just the CRPS spreading - my life can never be the worst. It is magnificent and pure. So whatever form it takes, is merely a definition of its state. Not a sentence to be ignored.

Thinking of what life could be, is important to me. It prepares me for possibilities that could very well be true. But it doesn't mean I'm not scared. Or the loss of life as I knew it isn't missed. So this reflection has to be.

I wonder too about my feelings if I do have ALS. How others would react to the enormity of what could be. Yet I know what I would think. I would not want to fill my days with pity. Or anger. Or regret. I would not want friends to feel sorry for me, or treat me as though life was bending in the wind. I would hope only that they would continue to water my roots and pause at branches still budding with leaves. To be grateful for our shade. And nourish our moments with tears of joy, that are reminded life is more precious than we know.

I wonder about my children and Don. But I will stop there, as those thoughts will bury me.

This is what I think. Today. A day when limbs are weak. Until more answers are found. Under a tree. In a shade. Where for now my heart will wait.

Cutting Stones

Trekking Nepal. The title radiates from the cover of a book my father just sent to me. An ultimate gesture of faith. Because he still believes.

Loved ones ask why this bad thing happened to me. Different. Difficult. Daunting. But does that mean that it is all bad? It is up to me to decipher this and to discover where good might hide.

The pain was bad. Up until my latest surgeries of electrical implants and cauterized nerves, pain blindfolded me to a darkness I never thought could be. I had become someone else. Someone who's life weighed too much to carry on.

But with a lifting of the weight, my mind has cleared and I am left to view the remnants of who I used to be. I must now launch this next phase of healing with the challenge of creating a life more meaningful than before; to look at each piece of my life as diamonds un-earthed by the hands of God. Raw, unrecognizable rocks of black with a beauty just waiting to be revealed. So if God planted me in front of a diamond mine, and said it was all for me, would that be considered bad?

So the choice is up to me. To break the bad into a beauty just for God to see. To fracture the darkness and design a light like He has never seen. Why would God create a life with out the potential to cut such a stone?

I have many diamonds piled at my feet. But there was one I cut this week I thought I never would achieve. I sat in a movie with Don by my side, and Reggie asleep on my feet. The darkness soothed. The glow of imagination laid like a sheet upon my skin. Don's hand on my knee. My head resting on his shoulder. Swept away by make believe and more present than I could ever be. Because in that moment I was free.

Cutting stones is not easy. Each effort leaves my body weak. But my heart is left wanting more.

So I will read my book my father sent. Because he continues to believe - that just because my legs have failed for now, it doesn't mean I cannot cut the most magnificent stones that God has given me.

What I Believe

About Micaela Bensko - Author of MoanaVida.com

I like pizza with soft crust. My egg yolks fully cooked. Sea salt from a dish scattered from the brush of my fingertips. Lobster reminds me of my grandfather who taught me the art of eating it whole, its eyes teetering from the snapping of its claws. Dipping the meat in melted butter then dragging it through the salt on my plate.

Sometimes I stand barefoot in the grass and regret I wear shoes at all. My favorite day is seventy-four with a Santa Ana wind. A house without dimmers makes me sad. Showers are my think tank. The toilet is my bunker. No one can expect anything from me in the toilet. I love when my dog kisses my feet or his tongue swipes my nose. The smell of someone else's fireplace gives me hope. The silence of a neighbor's house makes me wonder. I care if the checker at Ralph's thinks I'm nice. I try to return the cart in case someone's watching. I listen to people's conversations in line and wish I could say something. I wonder if my hairdresser is really happy. If my children's friends think I try too hard.

I worry if I'm parenting properly. I believe love is based on respect and without respect there cannot be love. The proudest moment of my life was completing my degree as a single mother of two. I think everything we endure we chose to happen before we were born. I believe fame is fleeting. Feeling is forever. Relationships are the key to purpose and meaning is only found in following your truth. I think people talk about others so they don't have to look at themselves. I believe mirrors lie. I believe we are not supposed to see ourselves as others do, otherwise we wouldn't be us. I think we have many soulmates and not just one. Like many teachers so we learn different lessons. I think marriage is made by hands with hope for the future of our world.

I think government is where hope goes to die as it is wrapped in a silken web of hypocrisy.

I wonder why war is an option. Why a young person cannot vote but can take a life for a country he is just getting to know. I wonder what patriotism means today.

When an old person walks slowly past, I wish I could see a picture of when they were young. My junk drawer gives me comfort. I can never find a pen. Or scissors. Or tape. But my children can. I cut my own hair when I was five. I first learned adults can lie when I was four. A crashing wave makes the Earth seem legit. The beach seduces me into retreat. I think adults are kids who've been around a long time. I think everything will be valuable someday. My idea of organization is putting things in bags. I'm obsessed with butts. Women with liposuction make me jealous. Perfection to me is fascinating and then boring. I like my dogs to sit on the sofa.

I admire people with manners. When children call me Mrs. My husband is my best friend. I wonder why he loves me. If one of my children died I would consider suicide. But I would stop. Because my other children were alive. If my husband passed I would never remarry. Because I loved the best there will ever be.

I see myself aging. It makes me scared. But it makes me relieved. Because now it gets real. Men do not stare but will care what I say. Women won't judge and might admire my age. When I feel strongly about something I will express it, but time has taught me to listen more than to speak.

I wish to be cremated. My ashes spread over my grandparents' farm. I believe in God. A power greater than anything our world could ever understand. So I don't try to understand. I just believe. I believe God is in me. In my children. My husband. In my neighbor's quiet house. It is in the boy who broke my heart and the man who stole it and made it whole. I believe one day it will all make sense. So for now the only thing I can do is be me. I am broken but aren't we all? We connect because we have missing pieces that others fill. Life is a puzzle. When it's complete we will see what it is. From above.

I know there is more to life but for now it is enough. Because grasping for it too soon will be fruitless. I believe in stopping. In letting life happen as it should. In showing up.

I will live until my time has come and embrace the end as the final chapter in the most wonderful book I've ever read. Like a child not wanting it to end, but too desperate to know the ending to stop.

This is what I think. Who I am. To anyone who cared enough to read this. I wish you the same. To stand in the beauty of our unfinished self and in the awe of a world that is not our own. I hope you embrace your journey with observation and reflection. And to believe that all you are is already enough. Even if you are perfectly broken. Like me.

Believing In Me

I've learned a lot about my condition lately. Just not the human one. That is why I blog. To try to figure it out by throwing up on a screen. Your screen. And I don't even bother to help you clean it up. It just stays there as you scroll, colluding your mind with questions I can't help you answer. But if there were answers, I wouldn't need to blog. Life is about sharing our questions. So we know we are not alone when we're lost.

I have learned that my form of CRPS in the neck is rare. Which is why other doctors told me no. No I do not have it. No they don't know what it is. And No they do not have the answer. Which is why I never stopped asking.

I asked so much that others turned away. Some I thought would never leave.

That is why I need to blog. So that others who are lost too, know that there is hope. But you are the one who has to say to yourself, "I believe in me."

I use the word 'hope' a lot. I used to not like the word. It was used too much when it should have been spared for those who need it most. Like my dearest friend Lou who battled Breast Cancer and won.

I hoped to find an answer. A name for what was wrong - so I could hold on to its letters with gratitude. Some don't want a diagnosis. It is a scary thing. But I had to know one was there. No matter what it was.

One doctor was convinced it was Multiple Sclerosis. Or ALS. Things you only see on TV. Unless it's you. My mind was open to whatever it was. But I wasn't going to accept it, unless I believed it, too. I'm not saying that's the right thing for everyone. But for myself it was a non-negotiable item. I had to believe in me.

That is where hope comes in. Because hope comes from within. And no one can take it away it is where true answers lie. And without it no doctor can help.

I've had doctors tell me to stay off the internet. To not look for answers on my own. I can understand that to a degree. So I never went overboard. But if something else made sense. I was not going to ignore it. I would ask if it was a choice of who I had to be. It angered one doctor because it questioned what he felt to be true.

When diagnosed with a condition that is rare, I can now assume most on this journey know defeat. The feeling of insecurity when questioned why I didn't stay when a doctor believed in anything else - but me.

But because I kept going. Propelled by those who wouldn't let go everything I knew could be - I am in a place protected by doctors who know I am scarred within. Because others like me, are all they see. The ones who kept fighting to be seen.

I have learned that diagnosis is just the beginning. And one doctor is rarely enough. I have several now who work in a group and meet every week to discuss the challenges they treat as a team. It is a multi-disciplinary approach. Where no one doctor holds every card. And no one sits as king. Which is why it has all paid off. The journey. The struggles. The temporary defeat. But I never let go of knowing that my input was as important in the equation, and my new doctors support this philosophy. If I don't believe in what I know can be, there is little anyone can do - even a king.

Japan

Another dream. More vivid than the night before.

Japan. Hillsides bursting with blooms ten feet tall. Sherbets. Whites. Pinks. I sat in the back as my parents drove. Telling my father I knew it was a dream, but how lucky were we to experience such beauty.

They dropped me off to meet up with Don. I left my chair behind. Because I wouldn't need it there. In my dream.

I ran to him. His arms embracing all I was. We trekked up a hillside. Grass reaching through snows reluctant to leave.

Anything was possible. In Japan.

The further up we went, the faster I could go. I thought about all the treatments I now would never need. I passed Don and he yelled for me to slow. His arms collecting my speed. He held me close and whispered, it was only a dream.

I have never been to Japan before. I do not know if its hillsides have colors, or grass that reaches through its snow. But now I want to go. To know if it was really what it seemed.

But at least I ran for a night. I saw colors I have never seen. And a freedom that will never leave. Because for now, all I have to do - in order to run - is sleep.

My Doctor Explains CRPS (Previously Known As RSD)

The Dream

The channels were clogged. I was on a ship. My husband and children waited for me at port, but I didn't know which one. It was night. The fog rolled in. Lights peeked through the mist as my heart sank to the depths below. My ship backed up and tried another route. To get to my family. But each channel was too small to fit its girth. I stood on the deck. Alone. Yelling their names and hearing only the echo of my sound. A wail of emptiness.
I desperately tried to call my husband on my phone. No signal. He was waiting. The children would be worried. Or frantic. Or tired. Or just wanted to be home. Either way, only I could fix their angst. If only I was there.
I yelled again into the darkness. As though one more try would work. Was I even in the right port? Did they know I ached for them too? The darkness slowly shifted to one less vibrant. The ocean's lap faded into the distance and the sound of my frantic voice woke me from my dream. Don's voice grew louder as it soothed my face. Wake up. Wake up. His hand around my arm. A gentle urge to stir me to the present. To land. To him. To where it's safe.

My first nightmare since the change began. After going out in my scooter. When I was grateful for the sidewalk with the ramp and wondered what life would be like if it wasn't there.

The therapist the day before had asked me if I had nightmares. I said no. Because my life is filled with dreams. But last night something changed. Until my husband woke me up. And there lies the difference in it all.

I have someone to wake me up. To tell me it is ok. That the lost ship isn't real. I have someone to remind me that fear is heard. And just when you think you are lost, you can be found.

I lay here pondering the significance of it all. The phantoms still stirring my mind - too real to fully let go. I realize that nightmares are only that. Something that happens at night. In the dark. When lights are out and a lost port is hard to find. But that is only because it never existed at all.

So I will replace this memory with a dream. That our family has set sail. Together. The mist will have colors and the darkness filled with stars to guide our way. The destination determined by God's hand. So we will never be lost.

I close my eyes in resolve that I am safe. The sound of my husband's breath calms me to a new sleep. Where fear only lives in a world of make believe. I slip into the calm. Waters wash away the remnants of the night with a light that fills the emptiness within. And I am new again.