Reggie and Me

I often wonder what my dog thinks of me. An intuitive streak within reminds me that I too may have once lapped water from a stream. Whimpered for orts. And claimed others as my own. Perhaps that is why we relate.

My dog, Reggie, operates in two very distinctive modes. Protect and Love. It's all he knows to do. Except play dead when you arrange your forefinger and thumb in the shape of a gun. Which should come in handy if we are ever held up and he wants to stir the mind of an unfriendly man.

I should learn to play dead. Oh wait. I have. Now I must learn to rise. To move forward. To lap water from a stream.

I think I'm ready. I keep looking at my dog, Reggie. Wondering if I am. I think he wonders too.

Today we ventured to the hair salon. Reggie sat at my feet in his K-9 harness, still to the tornadoes of hair dancing in the room. His nose trailing each strand of my hair as it fell to the floor. As though nothing else mattered in the world. But me.

But there's something he may never understand. That when we are together, I feel the same as him. I watch his eyes as they saunter to each sound. I adore the way his fur folds into his skin at the base of his neck. And the aged spot of white on the blackness of his nose. I smile at his tail as it tips to the ground and lightly sweeps the floor. He is a long haired dachshund, so the floor is most familiar to his ways.

I wonder what the world looks like to him. If it is now as daunting as it seems to me. Or if he only cares that I am in his way. So he might brush against my skin. With wheels that skirt my hem.

Like yesterday. The psychologist nodded as Reggie entered the room ahead of my chair. Accepting his role in my condition. Like a four-pawed caterpillar he made his way to the sofa where secrets are birthed. I had never been to a psychologist before. Reggie held my spirits to the floor, grounding my memory for her sift. Doctor appointments are usually spared his presence. More a consideration of other concerns than my own. But yesterday I needed him. More than ever. When my soul sat naked on the couch.

Reggie laid on my feet for an hour. For that hour, I forgot he was there. Because I remembered too much. Therapy will do that to a person, I guess. It forces you to say yes to things you stored in your chest for too long. But it also determines if you are fit to be repaired. To enter a program where doctors truly care. And they need to know if you care too.

I am now approved for the UCLA CRPS Program with intensive Ketamine infusions. I have less attachment to the outcome than I imagined. I know only what Reggie knows. That I am protected. And I am loved. No matter where I sit. In a sofa, or a chair. In a doctor's office, or a room with dancing hair.

We are now home. Reggie curled into my waist as I lay on my side. His breathing reassures that all is right in the world, no matter how daunting it may seem. How many whimpers there still may be. They are quelled by a dog who has saved this life with his selfless ownership of me.

Puzzle Peace

Quadriplegia is paralysis caused by illness or injury to a human that results in the partial or total loss of use of all their limbs and torso. My spine doctor read this diagnosis aloud from my chart. A picture I found difficult to piece together in my mind. Even if it is only partial.

Completing a puzzle is not easy without the box for reference. So many pieces scatter without an edge with which to frame the whole.

When you have undiagnosed CRPS, finding the right doctor is like drifting at sea, grasping for visions of life lines that are not there. You become so desperate to survive, that you cling to anything with air. Until it deflates and you find yourself treading the same murky waters as before.

Patients with CRPS are exhausted by the time we are diagnosed. When we have spent months or years trying to find the doctor that will tell us what we already know. That pain is real. The average CRPS patient sees five doctors before they receive a diagnosis. When they find the doctor that offers a line and pulls them in. Like mine.

I sat on the examining table. My father at my side. My friend Debbie watching with anticipation, writing notes on a paper towel as the doctor spoke to me. Like a person. My head hung in pause. Because I was so raw. Raw from other doctors who had poked so many holes in my raft. Who didn't know how to save me - from my self.

He held out his hand for me to hold - his palm toward the ceiling I had hit so many times before. I hesitated, my right arm weak from raising it so many times in prayer. So many nights of talking in my sleep to someone who wasn't there. Wanting answers no one seemed to have. Until now.

It's not their fault. Doctors are human. But we wish they were not. We wish they could heal with a wave of their hand. But all they can really do is try to piece together a puzzle without the box it came in with the picture on the front to guide them.

I have finally found a doctor with the box. He knows what the picture on the box should be.

I am so much better than I was even a week ago. The surgeries have lifted the pain level by seventy percent. Today I have a Psychologist appointment that will clear me for the UCLA program. I am tempted to tell her I have a crazy pain. Next is the UCLA neurologist to clear me of ALS. Simply a protocol as my symptoms mimic those of that disease. In six to eight weeks I will undergo Ketamine Infusions. This along with physical therapy and a tool chest of a multi-disciplinary approach just may reveal the picture on the box - is me.

I'm not sure what my puzzle will look like in the end. Only God knows that. But the edges are defined and the framework complete. Only time will guide each piece to its place. Guided by the hand that waited so patiently for mine. Facing the ceiling I no longer have to meet.

I looked down and placed my palm in his. With trust. And gratitude. For throwing me a life line - that brought me to a place where I can finally breathe - and showing me the box with a picture bringing with it a sense of peace.

The Ring

My favorite silver Silpada ring sits on the counter. Its arch Flattened from where my camera used to press against it within my shooting hand. A reminder of how things used to be.

Hammers collide within our home. Conversions alter the familiarity of its walls.

I can't believe how far my spine and I have come. Surgeries, along with acceptance to a prominent medical team, have changed the world I see almost as much as time has altered me.

The construction of home-conversions is almost complete. I will now be able to roller skate down the halls. If I could skate. Dance in an opened refrigerator. If I could dance. And race to the car at warp speed. If I could drive.

As walls come down, visitors have chosen to retreat. For now. To the wild. That's what I call it now. The Wild. Because the world is so different now. I pause before accepting invitations to its beast. Because I wonder how. How will I get to the sand. How will I make it through their twenty-six inch bathroom frame. Will their children like my chair. Or will they wonder if I am real.

I wonder a lot now. But one thing always replaces it - before it gets me down. The resolve.

I resolve that life may be different. But it doesn't mean it's bad. I have learned how to do things. Differently. In a way that empowers my mood. And makes my dog cheer inside.

I notice my change makes others reboot. Because they wonder too. If I could be you. And deep inside they know the answer is a truth.

My husband returns on Friday for good. The endless months of grasping for us will end. No more locations. Except for our home. A place we will relearn as our own.

Surgeries have staved the unbearable pain that imprisoned a vision only others could clearly see. A lilt in my voice has returned. Reminding me I'm still here. Friends have said I am different now. And I know this time it is good. Because who I was just weeks ago is now a stranger to me. An imposter dressed in a voice so horse from burdens it did not choose. So the transformations now - are all I need - to get to who I will become. Exactly who I was before. Only different. With a side slightly flattened where my camera used to rest. A life full-circle with an arch now softened by reflections of a sky still clearing from a storm. And a stone unturned. Still waiting to reveal a world I never thought would be.

Titanium - My First Real Chair

Sixteen inches. The width of my dining room chairs is sixteen inches. The man's voice had a texture that reassured my choice. I scrolled through the options as he described them. Cherry Red. Azure Blue. Sub-Lime Green. Titanium.

Titanium was more an option than a color choice. It was the option to leave the metal of the core of the chair looking bare - With a coating invisible to others, that protected it from the elements. Titanium makes a statement. It says I am fierce. I am not afraid of the world. Just dare me.

Choosing a chair on a sofa next to a walker, a scooter, a crutch, a stairlift, a toilet riser in the other room, can be daunting. You'd think maybe I would be more confident in taking this step toward mobility, but I couldn't help but feel like a fraud.

Wheelchairs were for people who could not walk at all. Who cannot feel their legs. Who need colostomy bags. I can still lock my legs to stand in the shower. Shuffle my feet with a walker to the toilet. I am the lucky one.

I had not earned the right to the TI Lite ZRa 2 low-profile ultra light-weight chair. That was for others more deserving than myself.

Until yesterday. When I tried to get to an X-ray appointment to determine the placement of the spinal cord stimulator leads in my spine, with nothing but my walker.

There is a delusion that haunts you when you go from walking to a chair. Perhaps it's the 'phantom limb' of mobility. When your brain is so used to knowing it can do something, that you are forced to adjust your thinking to adapt to the newness of disability. Yesterday was my last-hurrah of walking. For now. A reality-check that it should not take ten minutes to do something that usually takes ten seconds. That is how long it took for me to get from the radiologist's door to the curb. A total of twenty feet.

The chair sat on my screen. The voice gently enthused for me with my purchase. As though he had been there before. On a sofa, next to a walker, and a scooter and a crutch. A salesman without the sales. He didn't need to sell me on anything, and he knew that. He had guided me carefully through every option possible. I had no idea about all of the moving parts available, in immobility. Especially the option of Titanium.

My chair is one I am sure others like me dream of. I used to think it was a cool one too when I would see the guys I've worked with zipping around in it. It has bad-ass written all over it. A way of fending off the stares of pity with super-human powers of steel.

I learned a lot yesterday about people who use the chair. I learned that most people in chairs are just like me. We can still feel our legs. We can take a few steps or transfer to a shower. We can move our feet and use restrooms too. We just simply aren't like most people anymore. Which is why there is the option for steel.

The card went through. I closed my computer. And it was done. The official purchase of my first real chair. Twenty-four inches wide, eighty degree angle, Sub-Lime Color Package trim, custom-cushion, and a sixteen inch seat. With a Titanium core.

It was then I realized, getting my first chair felt a lot like getting my first car. I never thought I would have one of my own. But that doesn't mean I don't deserve it.

I will look at this next phase of my mobility not as a step back. But a roll forward. It is an opportunity for me to get from A to B without a Z in-between. I will use energies to heal rather than hinder. And there is no rule that says once I am in a chair - that I can never leave it behind. Except to someone else, who dreams of a chair with Titanium. Just like mine.

The Change

The warm water falls over my hands like a womb. The sink at just the perfect height for my forearms to rest on the counter. My chair fitting perfectly beneath its bowels. My head rests on my arm in resolve and gratitude to the doctor in the other room. A room more accessible than this one with the little blue man on its door.

The public restroom handicapped sink is much easier to use than the handicapped stall. Or the handicapped door to the restroom that weighs as much as the handicapped stall. I am so lucky to be driven to my appointments, as that means I always have someone to open these doors.

I am learning a lot about the change. The morphing of my old life to the new. Handicapped doesn't always mean accessible. Any time I see the bathroom door with the little blue man in the half moon, I wonder what it really means. As though one must pass the handicapable test of managing the door to earn the right to the stall and the sink. The stall and the sink I used to use in airports with extra luggage. Luggage. That was my loophole to the stall.

Now I cherish that stall. That sink. Amenities built for people like me. People who used to gaze longingly at their vacancy in busy restrooms, but are now passing by others who are crossing their legs in line.

Placing my legs beneath a sink was never a goal of mine. Not that placing them above one was either. As my mobility has deteriorated, one of the most difficult things to accept has been the modifications of my surroundings. Little blue men were for public restrooms. Not my own. But as time has stripped the will of my limbs, the choice is no longer mine.

Construction began this week on our home. Its floors are scalped. The sweet smell of breathing wood wafts through the hall. Doorways will be widened and the stairwell extended so my chair lift reaches the floor. It is just the beginning of the change. A change I thought would be for anyone else, but me.

But I have yet to wonder why. Which is the greatest curiosity of all. My parents wonder why. My friends do too. I lay here without the answer. So I choose not to ask. The why of it all is not for me to know. It's as though knowing the answer will affect the reason for it all. I wonder more about other things.

The water at the sink felt so good because it soothed the things I cannot change. Getting to the sink would be so difficult if I was alone. But I am not alone. I am surrounded by those who open the door. To that stall. To that sink.

The running water trickles to a stop. I dry my hands and turn to leave. The mirror reflects my head as it glides above the counter. To a door. Opened once again, by a friend.

The Shore

The sand washes into my nostrils and backs out into its wave. The grit of the earth coats my cheek. Left by a most difficult year - adrift and weathered. A ray of sun strokes my eyelid as it opens to a blinding sheet of possibility.

Pain brings with it an excruciating clarity. When you can sense nothing outside of your anguish, the world becomes simple. The only thing that matters, is God. When the flesh of your soul is stripped raw, and only He is large enough to cup it in His palm.

I was adrift. In a sea of the most unfathomable pain a person can endure. And I did endure. Because there was no other choice. But to say I didn't think of dying - would be a lie. On April 25th, I wanted to die. The date will be seared in my memory forever. It was the day after my birthday. When the pain became too much for a heart so worn. Then it happened again last month. I wondered how I could possibly survive forty more years. Of this.

But now I lay on the sand. Washed up on an unchartered shore. The smell of salt is familiar and soothing - God's way of telling me I will be okay.

The surgeries this month have lifted my soul. I can lay without wondering if I will survive the day. I can smile and laugh even if still from my bed. I can see the light upon my face for its guidance and not its burn.

Angels carried me to this shore. Hundreds of angels. Some I have never met. They heard a call and answered. Some without offering their name. So I will never know all who brought me to this place.

It is now time to raise my head. To clear my eyes. And ready for what is next. It will be a journey to mend what damage has been done to my limbs. To see if my neck will hold strong. But I sense a strength of spirit and mind. Because I am starting all over again. Like a newborn who knows only that God exists. That love is oxygen. And angels are real. The meaning in life is now clear because the clutter has been washed away in the darkest of seas. A sea I leave behind as I turn to face the mountain against the shore - lifted by wings I never knew were there.

Surgical Week Update

SCS Surgery from last Friday is looking successful! I am officially eight days post-op and the spine pain is cut by over 60%. I sat in bed comfortably today for the first time in over a year. SCS is a big step to take. But I am glad it's done. Rhizotomies from Wednesday are also healing well and have helped enormously in managing the cervical issues so I'd say this was a particularly full week!

Thank you for our meals, the love, messages, emails, texts, every single word has carried us all through one heck of a week. I am terrible right now about communicating as this has truly been survival week. Which is not half as much fun as Shark Week. Which is next week. So things are looking up.

Good news is: today I can see a light. I wanted the windows open. Took a shower. Smiled.

Now it's surgical recovery and in to see a specialist on CRPS to confirm diagnosis and begin therapy on my limbs. The question is, has there been irreversible motor damage in my legs and arm.

Thank you for your unbelievable support of our family. The fundraiser has made it possible for us to take a breath and pay sorely over-due surgical bills. The conversion of the staircase begins this week to extend the stair lift to the floor in the kitchen rather than at a landing with additional steps that "stop me in my tracks".

I don't know what the next 6-12 months will bring. I do know that whatever it is, it can't be more difficult than the last twelve. That's a good thing too.

Thank you especially to the children of our neighborhood who wanted to help our family and had lemonade stands and sales this week. We will never forget the feeling of reading your note and realizing all the hard work you did to make a difference in our life. Eliana, Levi, Jayden, Josie, Gianna and Cameron you are angels and I love you with all of my heart.

The children of Broadway Bound Players in Santa Clarita made head wraps they sold at their performances as well. The children pressed them at their homes and were in charge of this fundraiser and the image of young Luke ironing them in his home will stay with me forever.

Love to you all who have been there for us. Thank you again for being in my life. I can truly say, I do not know what I would ever do without you.

Rising Son

I am forty-three. An age when your children should be selfish. But then one day they look at you and say nothing - and everything at all - at once.

Yesterday, I was right in the middle of  fresh-off-the-presses Electro Spine Stimulator Surgery pain from last Friday.

All I had to do was get down the stairs.  Get down those stairs. I made it to the top of the stairs. Bed  to chair to shower stool to toilet lift to dry-shave. Lift. Wheelchair to staircase. This is life. On the way to the stairs.  And to the rhizotomies that were the last ditch effort to manage my pain without losing my mind. Then the stair lift broke. I sat at the top of the teetering, thinking, the stair lift broke.

My feet were placed upon the foot rest. "All clear!" when you push the On button. We have four children and three dogs running around at our feet.


I go to start the chair. (Read this as a Soprano's voice-over. It's more affective.)  I go to start the electric chair, because its electric you know? The kind Aunt Frances used when she spent the summer in that two floor apartment.

I push the black button. The one for GO. Which goes so well with the other button for STOP that's black too. Not like you'd notice, except for the blackness I feel underneath my fingertips when it moves. When I press GO.

My family frantically decides how to get me to surgery, if at all. I had been without pain management or water for eight hours, combined with the surgical pain from Friday's SCS  (Spinal Cord Stimulator) Surgery, it wasn't a pretty site.

I had to get down the stairs to the Rhizotomies. With an OR wiith white walls. Or peach if they're bold. I'd prefer to say that my procedure last night was of no color at all. Just blackness, like the tips of my fingertips from pressing GO.For a surgery it took months to get approved by the insurance company. And the surgi-center they approved the procedures for, was closing in seven days. I had to get. Down. Those. Stairs.

I made it down the stairs the only way a girl with crooked legs can. I held on real tight to broad shoulders, the pain so intense, tears had nowhere to go but behind my eyes. It was an inverted tight rope down a shaking cord connecting me to my feet.

I tried to look out to see what Nature had painted that day, but it was too beautiful to see anything I couldn't be grateful for at that moment.

I made it to the car. One step closer to being a gal who doesn't need any more surgery. After this.

My head hung into the klunk of the trunk as the wheelchair settled in. Women around here abound. But amidst the garble was the tone of my son's voice. Joe will be seventeen in November. I fell into the normalcy of murmurs feeding through the hollowness of the car. The window was down. I turned my face to the light to see who had squeezed my hand. I assumed it was friend or parent.

It was my son.

Memories of his childhood danced in the palm of his hand as I realized it was his. It was Joe who had been holding me up, placing me inside the car. My son said I love you, without any words at all.
My son brought me to the car that day.  My son looked me in the eyes - when most boys turn away.

I arrived for the Rhizotomies and am glad they are done, but the process about killed me. But I would do it all over again, just to see that look on my son's face, that said all that I needed to hear, just as we drove away.

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Today Is SCS Surgery

Today is my official Spinal Cord Stimulator Implant surgery (SCS). A device will be implanted in the flank of my back. Cords, or "leads", will be attached to it and they will be carefully inserted up through the epidural space of my spine. Half way through the surgery, I will be woken up enough to tell the doctor if the electricity is covering my lower pain areas properly. Then they will knock me out again and finish up. The device will be operated by a remote I will control that sends commands for electrical impulses that will be conducted through the leads to block pain signals from my lower body from getting to my brain. I underwent a trial surgery that resulted in 60% reduction in lower body pain. It will take six months for the device to seal within the tissues of my back.

Don flew home from production in Memphis. The greatest gift of all.

Finding Meaning In It All

I may never be the same. But it is my job now to find the beauty in the change. Some may see my condition as a tragedy. It is my choice to see it as a gift. But that doesn't mean it will be easy.

I have experienced a cry so deep it has no sound. When life places its palm over your mouth as your tears fall down its hand. This cry is reserved for moments you wish that God could hear. Because no one else could fix what's wrong. But God.

I had that cry on Tuesday morning. An aching for normalcy in my bones. I have forgotten what normalcy is like. Perhaps God does that on purpose; He removes the memory of what life was like before it changed. So you won't miss what is no longer there.

I often wonder what my life will be like in the future. But I never ask why it changed. It isn't something I need to know. All I need to know is how to accept the life that is. And that can only happen with time.

Life is not easy now. But has it ever been easy? Life is not normal, but has normal ever been good? I ask myself, wasn't it always my hope to connect with others on a more meaningful level? Didn't I wish to visit with friends and discuss the beauty and conflict of the human condition? To ponder the meaning of it all? To see the goodness in mankind that is so rarely mentioned in the news? So now that I have everything I wished for, it would seem unfortunate to push it all away, just because it happened differently than I had planned. Through the loss of mobility, I have settled into a peace that licks my wounds. It holds my heart as it calms and whispers that someday I will understand it all.

I do know working with injured has prepared me to know that life does go on. I've seen it over and over again. But I also know that no magic wand exists to make it all better right away. Every day brings with it a new awareness of self and its place in the world. How we are constantly evolving together and learning from one another. Sometimes it's through other people's trials that we learn the most.

I do know that because of this challenge, I am closer than ever to friends whose lives have been affected by this too. I have learned that we all yearn for meaning and crave a glimpse of what truly matters in this world. Loving one another. We have tightened the bonds that hold us together.

I have faith there is a purpose to this, because I feel it all around me. And I can sense it too. Even in the silence of a cry - that only God can hear.