History

My doctors are going back to the womb to heal my body and mind. I tried to clean up for them before they arrived. Hanging pictures of a perfect life upon the walls. But the nails bent and the images slipped into a truth the walls could not support.

My parents' divorce ripped my soul from my chest leaving flesh hanging from my breast with blood dripping into a pool of disfiguring thought. How could my perfect family fall apart? How could my father not want her to stay? How could she love him too much? Why is this memory still so painful to the touch?

Crusted stains remain where dreams once danced within my heart of a family I thought could live forever. I loved my family so much. It was the most beautiful gift of all. More beautiful than my favorite doll with eyes I swore could see. More real than my stuffed animals I spoke to before I went to sleep.

No one could ever take my family away. Until the two people I loved the most could not stay together.

I don't remember the day destiny put us on the plane to somewhere new. So we could plant new seeds. Because it takes a dream to do so, and mine was left at the terminal in a place on the ground I so wanted to hold and kiss and never, ever leave. How could they take this place away from me.

My doctors want me to relive these memories. To discover the places in my heart still left to bleed. My eyes are flooded with opened wounds, releasing an ocean of thoughts that trickle one by one onto an empty plate. Each drop is a world I need to explore. To unravel my history.

Healing from physical trauma is a complicated thing. Especially when it involves the nervous system still attached to broken dreams. In order for my body to heal, my mind must follow too. To open the way for my life to become a slate so clean that scars cannot bind to its skin.

I am working with the finest doctors in the world. I am in a program under the care of a team with a Multi-disciplinary approach that treats the body and the mind in order to truly heal. As we begin the ketamine infusions, I am becoming increasingly aware that the more difficult work will lay ahead. The clearing of memories still buried deep within my chest. The ones I thought had left. But never did. They lurked behind the cracks of light within my heart. I am now aware of their presence. And I must pave the way for them to leave. To rid the pain of history. So I can heal the rest of me.

This program is all-encompassing. I will be in ketamine infusions four hours a day, five days a week, for two weeks. The goal is to separate the brain signals from my muscles to "reset" my nervous system that has become a hornet's nest. Then I enter a four-week program of different doctors all day every day. I will be a full-time patient treating my body and my mind. From physical therapy to brain treatments, neurology to pain management. There will be nothing left of me but a slate so clean there will be nothing left to do but see the life ahead of me.

I tuck my childhood back in bed to revisit when I wake. I whisper to her she is no longer alone. There is nothing left to fear. Because I am here. After all of these years. Of her wondering where I have been. I am finally back. To listen. To heal. To mend. I am finally here. To mend.

The Row Reserved For Me

Frustration is passing by a handicapped row filled with able-bodied people at church. That may not be true, hidden disabilities abound. But it is what I felt. I asked the family if they were disabled. I had to ask. I couldn't hold back. The bad Judeo-Christian Neo-Buddhist in me was gagged in the corner and a dark side reared my head. We needed seats for our family. But only one seat remained in this row. I had to ask. Or else have my family pile on top of me in my wheelchair, so they could have a seat.

Of the fifty rows available, there is one long back row specifically for the disabled and their families. This family was not disabled in any way other than spirit. My heart tightened. I became the frustrated disabled person - Mad at who I used to be.

I had done it too. Sat in seemingly unused seats at a show or movie theater because I wanted to stretch my legs. Then someone would enter in a wheelchair, and I would secretly pray they would not choose my seat. They did not ask me to move. But now I know why.

There is such a deep-seeded angst when forced to request what has been reserved for you. A discomfort sets in. We should not have to ask someone else to move, because the handicapped section is not a section that we choose. It is a section chosen for us. Because we have no choice in what we cannot do.

I do not have the option of sitting in the middle row. So I can be closer to God. I cannot stand during songs and keep my arms in the air to express my undying love. I am limited now to praying at church in one specific place. A row reserved for handicapped, so please leave this row for us when you decide to pray.

An usher saw my plight and requested the family to move. But for the entire service all I could think of was how they responded when she did. A deep sigh from the mother, a shaking of the father's head. The children quizzically glanced at my chair, assessing why they were asked to move. To leave these seats their parents chose with the little man in blue. The entire service I felt the echo of their response inside my heart. I had done nothing wrong. But I finally understood why no one asked me to move when I sat in those seats before. Because the energy it causes never goes away. It's not worth it. That's why I never had to move before.

Handicapped seats are for disabled and their companions. Sometimes there is one handicapped seat that stands alone. That chair is for the able-bodied companion with room for a wheelchair next to. Or a string of chairs to fill the space with nobody there. They have thought this seating through with the greatest of care. A row just for us. Who did not choose their chair.

The service ended. I prayed for forgiveness for feeling the way I did. My heart released into the crowded mass of people. I realized in the future I will simply need to arrive sooner to reserve our seats, in the row reserved for me.

Disneyland List

My children's List of Things I Can Still Do At Disneyland (Even in a wheelchair)

Sit on the benches
Face painting
Get the rest of the family to the front of the line
Go on Pirates of the Caribbean
Eat at restaurants
Have picture taken with Mickey Mouse
Sit on a stool while someone paints my caricature
Shop
Go to the bathroom
Pet the reindeer
Hug Mickey Mouse
Find hidden Mickey Mouse heads
Go on the whale ride
Ride Dumbo
Ride the dinosaur tram from the parking garage
Sit on the trash cans
Blink
Watch people on the rides
Go on Small World
Go on any ride I want. Except for the ones I don't.

One Day

I chose the hallway this time for my walker expedition. A change of scenery. But the scenery wasn't the only thing that changed today. My right leg that had always raised its head with pride, just took its final bow.

My left leg took six months to deteriorate. My right leg took six weeks. I am now paralyzed. I can stand in the shower with legs locked. But the shifting of my legs with a walker for short shifts of optimism is finally over.

Physical therapy is never easy. Otherwise it wouldn't be therapy. My therapist is Paul. Our clinical relationship morphed into friendship today, because I could not hold back my tears. Friendships are born from the most broken ground. I had heaved my legs with each push of the walker. My weakened arms supporting my trunk until I could not make it back. I stopped mid-hall. My face to the floor. Because the floor is where it's safe. No eyes look back at me from there. A welling of my gut tightened into my chest and up to my eyes. A burning ache forced tears into my lashes that dripped down to the floor. I felt Paul watching. Knowing this was it. The moment my life would change. Again.

There are so many agains when you experience a progressive condition. Just when you think you're approaching it like a champ, the boxing ring dissolves into a liquid mass you tread to catch the air. The spirit flails, forgetting how to swim. And you are reminded this is a fight you may not win.

Our friends ask us what is going on. Where am I at right now. The only thing we know is my body is crashing by the week. Just weeks after the news felt so good. That ALS could be ruled out. I find myself revisiting the neurological possibilities of my condition. I cannot lift my knees. I cannot pull up my heels. My tongue sometimes feels fat. Liquid is beginning to slip at random times into my throat causing me to choke. I lay in bed at night and my muscles twitch throughout my body from limb to shiny limb. I wake up each day with swollen arms and a hand formed into a claw. My right arm cannot lift a one pound weight. My left arm cannot curl three. And my reflection is of a woman I thought I knew, but has forgotten me.

I have two previous EMG's that are positive for things indicative of a lower motor neuron disease.

My blood tests are all normal. No Lyme's, or Rheumatoid, or odd cell-counts.

The CT Myelogram of my entire spine is clear as is the scan of my brain. MRI's are negative. But the more tests come out clear, the cloudier my prognosis seems. Because it is by ruling out conditions that could mean a MND.

So for now I will look at today as what it is. One day. One day when things didn't go as planned. When I couldn't make it down the hall.

Paul brought me my wheelchair. His hands on my shoulders as they heaved in grief. Because I don't know what all this means. To a girl who never stopped before this all began. I remind myself of just one other thing. One day the clouds will part and it will all be clear. No matter what the future will bring.

Reggie Up!

A hundred hands surround Reggie, my therapy dog. His tongue bounces from his pant to form a smile the students love. Reggie is hard at work, breaking down the wall of uncertainty that exists between children and a soldier's scars. Reggie is my wonder dog. I wonder what I ever did without him.

Yesterday we spoke to the fourth graders of Hesby Oaks School, launching our program called "Reggie Up!". It is a program that uses the magnetism of Reggie, my therapy dog, and Stephanie's and my book The Soldier And The Squirrel, to pave the way for a wounded warrior to share his or her story with students around Southern California.

"Reggie Up!" Is the command I give Reggie to stand with front paws to the sky so I can pull him to my hold. It is a mantra I hope they remember when it is time to answer the call of our wounded when they are grown.
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After Reggie had his face-time, The 60 unweathered faces locked their gaze upon our open book, The Soldier And The Squirrel. Stephanie Orehek, the magnificent illustrator of our book, held the portfolio while I read each page. A book that began as a thought had come to vibrant life.

The Soldier And The Squirrel is about a wounded warrior, newly home from war. Little does he know, a squirrel lives on the hillside behind his house. And this squirrel has been watching over his family each time the soldier was deployed.

This time the soldier came home with a metal leg and two sticks beneath his arms. His enjoyment now comes from watching his children play in the yard, and naming the animals he sees on the hillside that make him smile. There is Rocky the Raccoon who makes their dog Blue Belle bark. A family of quail walks by named Moe, Curly, Thing One & Thing Two. A bird named Eyebrows eats from his hand. And rabbits named Thumper abound.

Each animal brings the wounded soldier joy. But it is the squirrel who learns from watching the soldier interact with his hillside mates - that the meaning of life is to make others happy. It is as simple as the end of a day.

The children applaud as we close the book. I announce we have a wounded soldier of our own to speak. LyVell Gipson stands and rolls up his pant-leg. Deep and checkered wounds patchwork the muscles of his calve; A remnant of what it was when he left for war. Forty-five surgeries later, he shares his scars like he has so many times before. But today is different. This time children will touch his skin and know that war is real. We do this so they will one day remember the soldier who came to share his scars. And when these children are adults, they will support this next generation of our wounded veterans and carry on the work that will need to be done.

LyVell begins his talk. The enlistment. The suicide bomber. The shrapnel that marked his life. And the speaking that opened his world to one of healing.

Sgt. Anthony Valentine from the Los Angeles Army Battalion joins our Question and Answer session with humor and wit. We close our session with unity. No walls remain between the children and the uniform. Our work is complete. But now it is us that doesn't want to leave.

A magic occurs when hearts come together for a common goal. The 4th Grade teachers at Hesby Oaks in Encino , Kathie Yonemura and Danny Pattison, are always seeking to expose their students to new ideas. We are forever grateful and hope our ideas stay with their students for a lifetime to come.

"Reggie Up!" Can be booked for your school or organization beginning January 2014. Contact Micaela Bensko through www.ReggieUp.com.

9/11 Remember to serve. Serve to remember.

The Caregivers Documentary

THE CAREGIVERS DOCUMENTARY HAS MADE IT TO PITCH FEST 2013! Documenting the caregivers of our wounded. I am grateful to announce that The Caregivers (Produced by Stephanie and Rodger Howard of Core Issue Productions, I am Consulting Producer) has just been accepted to premier as one out of only twelve documentary trailers from around the country at Pitch Fest - a screening for industry executives as a part of WestDoc 2013. In The Caregivers, loved ones take over the task of caring for their sons, daughters, husbands, fathers during their recovery from their wounds of war both physically, and psychologically. We observe their new normal, and the adjustments and sacrifices made by those who become, the caregivers. Out of sight, out of mind. “The Caregivers” is the first documentary to address the emotional challenges faced by those who care for their loved ones wounded in the war of Iraq and Afghanistan. It is about men who become children and children who become parents. Lives turned inside out, and a lens that faces in on an unspoken truth. That war conquers lives that must be rebuilt upon coming home. The goal is to build awareness of what it is like to care for our wounded illuminating the new normal they face and celebrating the unsung heroes of war.

"The Caregivers-- Testing the Bonds of Love" documentary trailer from Stephanie Howard on Vimeo.

Pandora

We were all set to go. Lights were off. Dang. Spine is too high. Can't do this with my spine stimulator on high.

You would think a device that vibrates would be stimulating. Especially when it is called a stimulator. But nothing really enjoyable happens in the spine. Except a massage. But nowadays that hurts too.

I open Pandora to Solo Piano. Fingers tickling little white keys should do the trick. Dang. Jim Brickman. Not sexy. Reminds me of breast feeding. The wrong kind of breast feeding. I switch the station to Norah Jones Radio. "I feel as empty as a drum. I don't know why I didn't come." Good God. Really. Change it again. Regina Spektor "Let's get a golden trailer, and have a baby boy...". One more baby and I will give you something golden.

I roll over to turn on the lamp. I need to find the remote for the overhead fan. The breeze is distracting. My fingers fumble through my nightstand drawer that's garbled with Tums, Gluten-Free protein bars, and my favorite pens with the fat grips for my fingers that fumble. I should write my thank-you notes. I thumb through the protein bars. Because protein is important at a time like this. I find the square remote with flush buttons. I press the wrong button. And I think, if the light was on, I'd be able to see the right button to press to turn on the light. The bright overhead light turns on instead of the fan turning off. Shootz. Now he sees my double chin as I strain to see the remote. His eyes squint. My cover is blown. I'm forty-three. Position is everything.

Fan is off. Mission accomplished. I feel like I should be standing on an aircraft carrier in a flight suit under a sign.

I resume my position. Wait. Something is under my left tush. It's like I'm princess with a pea. Oh, wait. That's my stimulator implant for my spine. The stimulator that is on too high. I need to turn this thing off so I can turn on. But if I turn off my stimulator I'll be in pain and won't enjoy being stimulated. Decisions. I roll over to the night stand. Need the spine remote. I know it's here. In the leather case. Leather. I remember leather. Leather used to be sexy. But that was the nineties. Now I am ninety. I find the spine stimulator remote. Beep. Beep. Beep. Beep. Getting the setting down so it's not in nail-salon mode. Ok. Now I'm ready. I position myself. I love him so much. This is just what I need right now. Lights are low. Fan is off. Stim is down. Can't see my other chin. Perfect.

My left leg flops.

Not sexy. Plop. Right down to the Egyptian cotton sheets I got on Groupon for the amazing price of 39.99. They were over a hundred retail, but I got a killer deal. Until they arrived in a pale shade of hospital. The hospital. Don't want to go back there. Thank God for the stimulator.

He supports my left leg with his manly arm. Plop. Right leg hits the sheet. He pulls my right leg under his other arm. Ok. I'm good to go. Thank God I did yoga when I could. Before that tailgate hit my head. Darn tailgate.

I breathe. I am woman. Carry on! My mother would be so proud of me.

He kisses my forehead. I love him so much. He kisses my cheek. I could never live without him.

Living. I love living. What if I died? What if the infusions don't work, and I'm diagnosed with another disease that takes me too soon. I would certainly want Don to move on with his life. But re-marry? Dang him. How could he even be thinking of remarrying at a time like this? Oh wait, that was me.

Wait. Is the door locked? He locks the door. That would be just too traumatizing to our children. To walk in on that. And the therapy bills?

He crawls back in. I position just-so. My neck cramps. Not good. Have to find my neck cream or it's all down hill from here. Turn on the light. Open the drawer. Protein bars. I'm hungry. Not that time yet. Got it. Need water. Honey, can you get me some water? Water, waterfall, bathroom. Ill be right back. Transport myself to the chair. Roll to the bathroom. Still haven't converted the door to the toilet so have to lock my legs and hold onto the walls to get to the toilet. He looks back at me. I wish he didn't see me this way. Locking my legs and maneuvering like someone on medical mystery as I struggle to the porcelain god. I flash to the moments I gave birth. All four of them. He has seen it all. Doesn't matter what he sees, right? He'll still love me.

He places my glass of water on my nightstand. He is back in bed. I make my way back too. I worry I'm not attractive anymore. Because I roll.

Wheels are locked. I transfer to bed. I shift to him, and curl inside his chest. My favorite spot. We spoon with what energy of mine is left. His lips against my hair. His breath into mine. The room becomes so still. His love envelopes me completely. Emotion swells behind my eyes. Wondering if this is what will always be. My constant searching for what was me. He holds my face in his large and gentle hands. And says he will never leave. I am everything to him no matter what the world may bring. Tears slip down my cheek and into his palms. He lingers a kiss upon my forehead so soft my heart holds an extra beat; Wanting never to let go of his eyes embracing me. He pulls me closer to our fold. Whispering it doesn't matter how difficult life will be. There's only one thing he will ever need. He simply needs just me.

I close my eyes and wonder how I could possibly be so lucky. Who else could possibly smile at my idiosyncrasies. And I know then that he was planted by God - because He knew this day would come. And He has filled my every need.

Three A.M.

Something happened on the way to the bathroom. It was three a.m. The witching hour. When magical things occur. I received a message from my friend on Facebook who knew a publisher she wanted me to meet for my children's book The Soldier And The Squirrel.

I had already tried the query-letter route - to find an agent - to get a publisher. Writing the letter was more exhausting than completing a novel. Or a memoir about a spine that turns into a popcorn machine. Or a book about a soldier and a squirrel. Then came the rejection letters. Those are a blast. So I decided I was going to figure out this whole indie-pubishing thing on my own and heal the wounds on my thinning skin.

But then I went to the three a.m. happened. My beautiful friend has a life worthy of a fashion model, traveling in circles of dreamers who know better than to wake from it all. She knows a publisher and felt we should connect. Because he was a dreamer too.

I excitedly penned his information down and started working right away. Not on my next query letter, but on a website for my children's book. I was compelled like a manic orangutan with arms flailing to complete the site by the end of the day. And I did.

There is a momentum that comes with a truth. When something is meant to be. I couldn't take my eyes off the screen. Building the website was all I could focus on. What should have taken a week, took a day. I have decided to call it Rome.

My book is about a soldier who finds himself home due to the loss of his leg. His boredom is lifted by the animals in his yard, especially a squirrel.

The book is not just a book. It is a mission. My therapy dog Reggie and I will visit classrooms bringing awareness to our youth of the wounded in our communities who will someday need their help. Every child is a squirrel. And their purpose is to bring joy to the lives of our veterans in need.

I spoke to the publisher yesterday. He will be attending my first speaking engagement to a group 4th graders on 9/11. He will see the book at work.

Magical things happen at three a.m. I just may starting my alarm to see what else life has in store. Until then, let the games begin.

Visit the website for The Soldier And The Squirrel and the program at www.ReggieUp.com

Random Thought

Lately my mind is fertile ground for random thoughts; A thought pattern equivalent to the monitor on a geriatric chest. Blip. Thought. Blip. Thought. Beeeeeeeeeep. Thought.

White noise reveals moments like stripper with her tease. They happen in the shower, or under a hair dryer. Out of nowhere, I wonder what life would be like if I changed my given name to Chitty Chitty Bang Bang. What if I created an album on Facebook with pictures of pets in my yard and titled it American Safari. Just to one-up my friends.

I wonder if the lump in my groin slipped down from my throat.

Then randomness turns sweet. Fall is the shedding of a weathered skin - Colors revealed to heal the mind of summer's heat. That animals make us better people - because they teach us to speak with our hearts. Then I wish there was less emphasis on wanting celebrity. It is when we see the beauty in others, not ourselves, that we accomplish something meaningful in life.

Speaking of famous, nuts are fattening. God's cruel joke.
Now I save nuts for dessert.

Then my thoughts turn into lightbulbs. Momentary clarity of how life has changed. And not always for the worse. Full length mirrors are cheaper now. The tall one is simply a waste of space.

But most of all - I sit in wonder at how the mind can heal the soul. A challenge without humor is like cancer without the scarf. It may not cure, but can like a random thought, sweep gently over the heart.